Spring 2010 - National Marfan Foundation

National Marfan Foundation: Education, Research and Support for the Marfan Community
What’s Inside
Heartworks Galas . . . . . . . . . . 1, 22
Gala Photos . . . . . . . . . . . . 12–13
Clinical Trial Update . . . . . . . . . . . 3
Message from the President . . . . 3
2010 Conference . . . . . . . . . . . . . . 4
MedQuest . . . . . . . . . . . . . . . . . . . . . 6
Membership Campaign . . . . . . . . . 7
Have Heart Campaign . . . . . . . . . . 9
Emergency Planning . . . . . . . . . .
National Volunteer
10
Network . . . . . . . . . . . . . . . . . . 14–19
People & Events . . . . . . . . . 14–15
Chapter & Network News ... 16–18
Volunteer Profile . . . . . . . . . . . 19
Medical Education . . . . . . . . . . . . 20
Spring 2010
Vol.29, No.2
Heartworks Gala Photos Inside
New Guidelines Announced to
Prevent Aortic Dissection Tragedies
NMF at Forefront of Coalition to Promote Awareness
On March 16, the country’s leading medical associations, including the American
College of Cardiology (ACC) and the American Heart Association (AHA), released
the first-ever diagnosis and treatment guidelines for aortic disease. The goals of these
guidelines are to identify those who are at risk of aortic dissection and make sure
they are managed properly so they can avoid a fatal tear or rupture. In addition, the
guidelines provide doctors with information about how to detect and treat an aortic
dissection in the emergency department so that even a tear in progress can be identified
quickly and treated emergently.
In anticipation of the release of these guidelines, the National Marfan Foundation
convened the TAD (Thoracic Aortic Disease) Coalition to help assure that people
with aortic disease can get the highest quality of patient care. The TAD Coalition
created a companion piece to the medical guidelines and named it “Ritter Rules” to
honor John Ritter. The purpose of Ritter Rules (which can be found on page 11) is
to help raise awareness among the public about aortic dissection so that people can
reduce their risk of the same kind of tragedy that took the life of the beloved actor.
Continues on page 10
Heartworks Galas Shine Attention on Marfan Syndrome
The Heartworks gala in New York City continues to be a beacon
for the National Marfan Foundation, reaffirming each year the
commitment of our New York area friends and colleagues to the
Foundation’s mission. The Heartworks that are taking place in
other parts of the country are also showcasing the NMF and
focusing the spotlight on Marfan syndrome. Heartworks St. Louis
was a great success again this year; Heartworks Westchester was
taking place on May 22, as this issue was going to print. Another
Heartworks is being inaugurated in Atlanta on November 18.
The monies raised at Heartworks are critical because they help
secure core programs and services for the Marfan syndrome and
related disorders community.
“We are continuing to seek new Heartworks opportunities
around the country,” said Carolyn Levering, NMF President and
CEO. “As we add new events, NMF members will have more
opportunities to be part of the energy and commitment that is
extended to the Marfan community at these affairs.”
Hero
with a
Heart
Hoda Kotb, Karen Murray, Hero with a Heart Award recipient Duke Cameron, MD,
and Mayor Michael Bloomberg
In New York, the April 22 event featured masters of ceremonies Hoda Kotb, of NBC, and her colleagues from the New York
NBC affiliate, Jane Hanson and Janice Huff. Their excitement about the honorees, the live auction, the silent auction and the
Turn to page 12 for more photographs from the 10th Anniversary Heartworks Gala Continues on page 22

2
Connective Issues
Dates & Deadlines
June
June 6
June 6
June 26
July
July 8–11
July 23
July 25
July 30
July 31
July 31
August
August 28
August 29
August 29
September
TBD
TBD
Sept. 20
Sept. 26
Spring 2010
Mid-Atlantic Provisional Chapter Family Lunch and Smithsonian
Museum Tour
Contact: Amy Speck, siberianspring@hughes.net
NMF Northern Illinois Chapter 17th Annual Walk-a-Thon
Ty Warner Park, Westmont, IL
Contact: Bruce Klein, 630-415-0044 or bklein01@sbcglobal.net
Silicon Valley, CA, Local Network Group Meeting
Contact: Maya Zimmerman, maya.m.zimmerman@gmail.com
NMF 26th Annual Conference, Houston, TX
Register at www.marfan.org
Contact: Maggie Hogan, 800-8-MARFAN, ext. 38 or
mhogan@marfan.org
12th Annual JAFGO Golf Outing, Mill Pond Golf & Catering, Medford, NY
Contact: Glenn Stidham, 631-676-6706
Massachusetts Chapter “Heart to Heart” Support Meeting
11:00 am at Children’s Hospital Boston at Waltham
Contact: Jon Rodis, 617-846-4975 or jrmarfan58@aol.com
Heart of Iowa Chapter Moonlight Stroll, 8:30–10:00 pm, Pleasant Hill, IA
Contact: Teri Dean, 515-371-5633 or tkdean11@mchsi.com
Heart of Iowa Chapter 10th Anniversary Have Heart for Marfan Walk
and Fun Run. Registration begins at 7:00 am, Pleasant Hill, IA
Contact: Teri Dean, 515-371-5633 or tkdean11@mchsi.com
PennJersey Chapter NMF Night at the Riversharks baseball game
Contact: Annette & Dan Makanoff, 856-751-1796 or
dmakanoff@comcast.net
Chapter Quarterly Financial Form and Year-End Summary Due
Silicon Valley, CA, Local Network Group Meeting
Contact: Maya Zimmerman, maya.m.zimmerman@gmail.com
Mid-Atlantic Chapter Summer Barbecue and Meeting, Centreville, VA,
1:00–4:30 pm
Contact: Kelly Berklite, kberklite@verizon.net
PennJersey Chapter 5th Annual Family Picnic
11:00 am–4:00 pm, Laurel Acres Park, Mt. Laurel, NJ
Contact: Annette & Dan Makanoff, 856-751-1796 or
dmakanoff@comcast.net
10th Annual Northern CA Chapter Family BBQ/Fundraiser/Steering
Committee Meeting
Contact: Susan Meier, 916-632-3214 or susan.meier@starstream.net
Sacramento, CA, Area Local Network Family Potluck and Game Night
Contact: Susan Meier, 916-632-3214 or susan.meier@starstream.net
St. Louis Chapter Meeting, Barnes-Jewish Hospital, 7:00–9:00 pm
Contact: David Striker, 314-542-2413 or dasmd913@aol.com
Massachusetts Chapter Annual Get Together, Winthrop, 1:00–5:00 pm
Contact: Jon Rodis, 617-846-4975 or jrmarfan58@aol.com
For more details about upcoming events and meetings, be sure to check the NMF
Calendar on our website, www.marfan.org.
22 Manhasset Avenue
Port Washington, NY 11050
516-883-8712 | 800-8-MARFAN
www.marfan.org
Boards & Staff
Board of Directors
Jon Tullis, Chair, PA
Gavin Lindberg, Vice Chair, MD
Karen Murray, Secretary, NY
Raymond Chevallier, Treasurer, NY
Susan Falco, Executive Committee Member-at-Large, NY
Gary Kauffman, Executive Committee Member-at-Large, FL
Mary J. Roman, M.D., Executive Committee Member-at-Large, NY
Scott Avitabile, Member-at-Large, NJ
Steven Crombe, Member-at-Large, FL
Teri Dean, Member-at-Large, IA
Barbara Heller, Member-at-Large, MD
Jerry Lerman, Member-at-Large, NY
Jim Sidorchuk, Member-at-Large, NY
Diane M. Sixsmith, MD, Member-at-Large, NY
Benjamin Weisman, Member-at-Large, MA
Priscilla Ciccariello, Chair Emeritus, NY
Michael Weamer, Board Advisor, NY
Professional Advisory Board
Dianna Milewicz, MD, PhD, Chair, University of Texas Houston Health Science Center, TX
Alan C. Braverman, MD, Washington University School of Medicine, MO
Peter H. Byers, MD, University of Washington School of Medicine, WA
Duke Cameron, MD, Johns Hopkins Hospital, MD
Heidi Connolly, MD, Mayo Clinic, MN
Joseph S. Coselli, MD, Baylor College of Medicine and St. Luke’s Episcopal Hospital, TX
Jessica G. Davis, MD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY
Richard B. Devereux, MD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY
Hal Dietz, MD, Johns Hopkins Hospital, MD
Sylvia A. Frazier-Bowers, DDS, PhD, University of North Carolina at Chapel Hill, NC
Ronald V. Lacro, MD, Children’s Hospital Boston. MA
Irene Maumenee, MD, University of Illinois Eye and Ear Infirmary, IL
D. Craig Miller, MD, Stanford University School of Medicine, CA
Reed E. Pyeritz, MD, PhD, University of Pennsylvania School of Medicine, PA
Francesco Ramirez, PhD, Mount Sinai School of Medicine, NY
David L. Rimoin, MD, PhD, Cedars-Sinai Medical Center, CA
Lynn Y. Sakai, PhD, Oregon Health Sciences University, OR
Paul D. Sponseller, MD, Johns Hopkins Hospital, MD
Vincent L. Gott, MD, Johns Hopkins Hospital, MD, Member Emeritus
Victor A. McKusick, MD (1921–2008)
Scientific Advisory Board
Bjorn Olsen, MD, PhD, Chair, Harvard Medical School, MA
Craig T. Basson, MD, PhD, New York Presbyterian Hospital-Weill Cornell Medical Center, NY
John C. Carey, MD, University of Utah Health Sciences Center, UT
Bruce D. Gelb, M.D., Mount Sinai School of Medicine, NY
Christine Seidman, MD, Harvard Medical School, MA
Robert W. Thompson, MD, Washington University School of Medicine, MO
Richard J. Wenstrup, MD, Myriad Genetic Laboratories, Inc., UT
Victor A. McKusick, MD (1921–2008)
Staff
Carolyn Levering, President & CEO
Judy Gibaldi, Senior Vice President, Operations & Finance
Josephine Grima, PhD, Vice President of Research & Government Relations
Jennifer Buffone, LCSW, Director of Support Services & Volunteer Development
Jennifer Grignoli, Director of Development
Maggie Hogan, Director of Foundation Relations & Conference Planning
Jonathan Martin, Director of Education & Awareness Programs
Eileen Masciale, Director of Communications, Newsletter Editor
Brian Polk, Director of Information Technology
Cathie Tsuchiya, Administrative Director & Local Fundraising Coordinator
Kathy Jeffers, Manager of Volunteer Development
Amy Kaplan, RN, Manager, Information Resource Center
Alexandra Dubow, Design & Production

There is still time to enroll in the Atenolol vs. Losartan in
Individuals with Marfan Syndrome clinical trial—the deadline
for the trial to enroll 604 participants is January 31, 2011.
You must be between six months and 25 years of age and meet
additional criteria (see box below for details). There were 535
people enrolled in the trial as of April 26, 2010; only 69 more
are needed.
The clinical trial is funded by the National Heart, Lung,
and Blood Institute and conducted by the Pediatric Heart
Network and leading Marfan syndrome clinics around the
country. It is comparing the effect of losartan, an FDA-approved
medication, and atenolol, a beta blocker that is the current
Connective Issues
Message from Carolyn Levering, NMF President & CEO
The NMF was gratified by the publication of the new guidelines on aortic disease diagnosis and treatment
earlier this year. With the American College of Cardiology (ACC) and American Heart Association (AHA)
leading the effort, along with several other important medical associations, the guidelines are a critical step in
the right direction for people with aortic disease, including our Marfan syndrome and related disorders
community.
It wasn’t too long ago—1995—that the NMF was a lone voice advocating for awareness of aortic disease
in order to prevent emergency department tragedies. At that time, there were an increasing number of people
calling our hotline who had lost a loved one who had been misdiagnosed in the emergency department. We saw this sad trend
and knew we had to be proactive in raising awareness to help the Marfan community. As a result, we developed our Emergency
Medicine Campaign.
Continues on page 21
Less Than 70 Additional Patients Needed: Enroll in Clinical Trial Today
If you or your child have recently been diagnosed or
if you have been thinking about enrolling in the trial,
now is the time to take action. For more information
about the clinical trial, go to the NMF website,
www.marfan.org.
Who Can Be in The Trial?
To be in the clinical trial you must:
• Be between the ages of six months and 25 years at the
time you begin the trial.
• Have a diagnosis of Marfan syndrome.
• Not be pregnant.
• Not have had any aortic surgery.
• Not have serious side effects from either atenolol or losartan.
• Not need to take atenolol or another beta blocker to treat a
medical problem other than your dilated aorta.
• Be willing and able to travel 5 times over 3 years to the
study site for all study echocardiograms and examinations.
gold standard, on the aorta (the large vessel that carries blood
away from the heart) in people with Marfan syndrome.
The length of the study is three years from the time of
enrollment. Scholarships are still available from the NMF to
help people travel to a study site and help cover other costs
that are not covered by their health insurance.
Marfan Research: A Family Affair
Jennifer Phillips, of
South Grafton, MA,
h a s t w o s o n s ,
Gregor y, 13, and
Douglas, 11, who
have already completed
the three-year study,
visiting the site at
Children’s Hospital
Boston. She is thrilled
that they were able to
participate and contribute
to Marfan syndrome
research.
“Even though it was three years, participating in the trial did not
require any extra effort on our part,” said Jennifer. “The boys were
already seeing the cardiologist regularly, taking medication and
getting echocardiograms. There was only one extra appointment.
It was an easy decision for us to get involved.”
Jennifer and her husband, Justin, who also has Marfan syndrome,
were fully confident in the trial. As Jennifer noted, “The two study
drugs are already approved and on the market and we knew
their record of safety. It’s really a matter of finding out how they
affect the Marfan aorta and we wanted to do our part.”
Douglas and Gregory were happy to be involved in the study. In
fact, they are the ones who urged their father to enroll in the
NMF-supported adult study on losartan that was conducted at
Brigham & Women’s Hospital.
Volume 29, No. 2 3

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Connective Issues
Registration Still Open for 26th Annual Conference
on Marfan Syndrome and Related Disorders
There’s still time to
register for the
NMF’s 26th
Annual
Conference
in Houston,
July 8-11.
Co-sponsored
by Baylor College
of Medicine and the
University of Texas Health Science Center at Houston, the
conference offers something for everyone. This year’s program
includes a general session with topics in cardiology, ophthalmology,
cardiothoracic surgery, pediatric complications and
other relevant issues as well as 60 medical and psychosocial
workshops. For full conference details and online registration,
visit the NMF website at www.marfan.org.
Early Bird discount registration and registration for children
and teens end on May 31. Adults may register any time after
May 31, including on-site at the conference.
CONFERENCE AT-A-GLANCE (Subject to Change)
Friday, July 9
1:00 PM Registration Opens
4:00 – 5:00 PM Orientation for First-Time Attendees
5:30 – 7:00 PM Welcome Reception
7:00 – 8:30 PM Special Screening of Marfan documentary
In My Hands
Saturday, July 10
8:30 AM – 12:15 PM General Session
12:30 – 2:15 PM Awards Lunch
2:30 – 6:00 PM Medical Workshops
Sunday, July 11
8:30 AM –12:45 PM Psychosocial Workshops
1:00 – 3:00 PM Farewell Lunch and Living Successfully
Program
Spring 2010
Conference Programs for Children and Teens
Throughout the weekend there are special programs and fun
activities for children (ages 5–12) and teens (ages 13–19). This
year’s program for children includes visits to the Houston
Aquarium and the Museum of Health and Science and an
Ask A Doctor session with members of the NMF’s Professional
Advisory Board. Teens will also have fun and educational
opportunities at the conference. There will be workshop sessions
designed just for them as well as a trip to Oil Ranch,
the largest guest ranch in Texas.
PAB Member Dr. David Rimoin, of Cedars-Sinai Medical Center,
examines a young NMF member at the free Marfan Clinic (available by
appointment only) at the Annual Conference.
Marfan Documentary Film
A highlight of this year’s conference is a special screening of
In My Hands, an inspiring documentary film that focuses on
individuals and families learning to live with Marfan syndrome.
Tony Award-winning dancer and choreographer Ann Reinking,
whose son Chris is affected with Marfan syndrome, is featured
in the documentary, working with a group of teenagers and,
through dance, building their self-esteem. This wonderful
film is a moving tribute to everyone with Marfan syndrome—
don’t miss it!
Continues on page 21
Last year was our first conference experience, and it was really a life-changing event for my
husband and me. With the knowledge we obtained at the conference, my husband felt more
empowered to advocate for himself. Earlier this year, he had valve-sparing aortic root replacement
surgery and is now doing great. He could easily have been one of the emergency room
tragedies, if not for all the knowledge we obtained at the conference. Thank you!
Heather Bergstrom, Minnesota

NMF to Honor Denton A. Cooley, MD,
Pioneer in Heart Surgery
Denton A. Cooley, MD
Marfan Eye Study Needs Volunteers
NMF Professional Advisory Board member Dr. Hal Dietz and his
colleagues at Johns Hopkins University are investigating the eye
problems that individuals with Marfan syndrome have, and
whether any currently available medications help with these
problems. They are interested in hearing from individuals who do
not have significant eye problems, as well as those who do. This
will also help them get a better understanding of the types and
frequencies of eye problems present in Marfan syndrome. They
are looking for information on individuals in all age groups.
Participating in the study requires filling out a short questionnaire
about your medical diagnosis, eye history, medications, and
past/current eye physicians. The questionnaire should take
about 10–20 minutes to complete, depending on your medical
history. A consent form and medical release form is also included.
Records will be obtained from your past/current eye physicians,
so if you do not know exact details of your eye history, it is not a
problem.
If you are interested in participating, please email the research
team at MarfanEyeStudy@jhmi.edu and they will send you a
copy of the questionnaire, consent form, and medical release
form to sign. Please also feel free to ask them any questions
you have in your email.
Please note that patients who are currently enrolled in the losartanatenolol
clinical trial are not eligible for this study because their
medication type is unknown.
Connective Issues
The NMF is delighted to be awarding its prestigious Antoine Marfan Award to Denton
A. Cooley, MD, at the annual conference awards luncheon, July 10, in Houston. The
award is bestowed annually to a noted medical professional who has made a significant
commitment to improving the length and quality of life for people with Marfan syndrome
and related disorders.
Dr. Cooley is a world-renowned surgeon who pioneered many techniques used in
today’s cardiovascular surgery. He is surgeon-in-chief and president emeritus of the
Texas Heart Institute, which he founded in 1962. Dr. Cooley is also currently chief of
Cardiovascular Surgery at St. Luke’s Episcopal Hospital, Consultant in Cardiovascular
Surgery at Texas Children’s Hospital and Clinical Professor of Surgery at the University
of Texas Medical School at Houston. He served on the full-time faculty of Baylor
College of Medicine for 18 years as a professor of surgery.
Dr. Cooley is celebrated for performing the first successful human heart transplant
in the United States and the first heart surgeon to implant an artificial heart in man.
With his associates, he has performed more than 100,000 open heart operations during
his illustrious career.
Please join the NMF at the 26th Annual Conference as we salute this most deserving
honoree.
PAB and SAB News
The NMF is proud to share news from members of our Professional
Advisory Board (PAB) and Scientific Advisory Board (SAB).
Dr. Hal Dietz (PAB) was appointed Chair of the National
Arthritis and Musculoskeletal and Skin Diseases Advisory
Council. He also became a member of the Global Fibrosis
Foundation Medical Advisory Council. Dr. Dietz was awarded
the George E. Brown Memorial Lecturer Award from the
American Heart Association and the Niccolo Paganini Prize
at the International Congress on Marfan Syndrome organized
by SIMA (Asociacion Sindrome de Marfan) from Spain.
Dr. Dianna Milewicz (PAB) was
appointed Chair of the Thoracic
Aortic Disease Coalition (TAD
Coalition).
Dr. Bjorn Olsen (SAB) was awarded
the International Association for
Dental Research (IADR)
Distinguished Scientist Award for
Craniofacial Biology Research.
Dianna Milewicz, MD
Dr. David Rimoin (PAB) was awarded the American College
of Medical Genetics Lifetime Achievement Award and the
Johns Hopkins University Distinguished Alumnus Award.
Volume 29, No. 2 5

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Connective Issues
MedQuest: Post-Aortic Surgery Issues
People with Marfan syndrome and related disorders should have their aorta evaluated regularly so that the size of the blood vessel and
the function of the aortic valves can be monitored. When the aorta reaches a critical size (usually 4.5–5.0 cm), surgery is recommended
to prevent a potentially fatal tear or rupture. After this initial surgery, the Marfan journey continues. And, as the NMF’s Professional
Advisory Board (PAB) reminds us, vigilance is still needed. Repairing the aortic root can solve the immediate problem, but the Marfanaffected
person must continue to be monitored and take precautions because the rest of the aorta is still at risk. In this issue of Connective
Issues, PAB member Dr. Alan Braverman, Director of the Marfan Syndrome Clinic at Washington University School of Medicine
and Barnes-Jewish Hospital in St. Louis, addresses some of the common post-aortic surgery questions.
How often does the aorta need to be imaged
after aortic surgery?
After prophylactic (preventative) aortic root replacement surgery,
the thoracic aorta should be imaged annually with CT
or MRI scans to evaluate the aortic repair and remaining
segments of the thoracic aorta. MRI is often preferred as to
avoid repeated radiation exposure which occurs with CT scans.
If an ascending (type A) aortic dissection has occurred,
then it is important to have the aorta evaluated frequently at
first to look for any signs of progressive enlargement or
dilatation of the dissected aorta that was not grafted. Usually,
this includes a CT scan or MRI scan in the first to third
month after the dissection, then at six months, 12 months,
18 months and 24 months. If the aortic size is stable, then
annual aortic imaging is performed. A similar protocol is
used to image the aorta after a type B or descending aortic
dissection.
Is medication still required after aortic surgery?
Medications are required after aortic surgery. Even if the blood
pressure is normal, beta blockers are used to lessen the stress
on the aorta. If an individual has high blood pressure, then
additional medications are used. The goal is to have the
blood pressure 120/80 or less.
What is the likelihood that there will be an
enlargement in another part of the aorta and
that more surgery will be needed?
A small percentage of people with Marfan syndrome will
develop enlargement in other parts of the aorta, such as the
arch, descending or abdominal aorta. Therefore, it is important
to continue to image the aorta over time. However, if an
aortic dissection has occurred, it is much more common to
develop enlargement (aneurysm formation) in the aorta which
has been weakened by the tear. Other related disorders, such as
Loeys-Dietz syndrome, are much more commonly associated
with aneurysms in other parts of the aorta and its branches.
Spring 2010
Can exercise be resumed after aortic surgery?
Are there limitations?
Appropriate exercise is important for everyone as long as
guidelines specific to his/her specific situation are followed.
Although the proximal aorta is at highest risk for aortic
enlargement and dissection in Marfan syndrome, the rest of
the aorta may develop enlargement and is at risk for dissection,
too. Thus, it is still recommended that people with Marfan
syndrome choose exercise and activities that do not put a
heavy strain on the aorta. For example, choose light levels of
exercise such as leisurely walks or easy bike riding, golf or
recreational swimming rather than heavy weight lifting (or
isometric exercise). A general rule is to limit the activity to a
level at which one is able to speak in a conversational voice.
If a woman with Marfan syndrome has already
undergone aortic root replacement, is she still
at an increased risk if she became pregnant?
All women with Marfan syndrome are considered at higher
risk for aortic dissection during pregnancy and should be
evaluated by a multidisciplinary team of doctors including
an obstetrician knowledgeable about Marfan syndrome
(often a maternal fetal medicine specialist), a cardiologist and
a geneticist. There are many examples of successful pregnancy
in women with Marfan syndrome who have previously
undergone aortic root replacement. Unfortunately, there
have also been reports of aortic dissection in the aorta away
from the repair. Women who have already had aortic root
replacement are still at risk for dissection in the descending
aorta and must be monitored very carefully during pregnancy
and in the several weeks following delivery. There are no
large databases of women with Marfan syndrome who have
had pregnancy after aortic surgery from which to draw
conclusions about the exact level of risk. The risk is much
greater if an aortic dissection has occurred and one generally
advises against becoming pregnant if there is residual aortic
dissection present.

Connective Issues
2010 Membership Campaign: “My Support Counts”
Did you know that only five percent of the Marfan syndrome and related disorders community regularly support the NMF’s annual
membership drive? This astounding figure places pressure on the NMF as we continue to provide services to all those in need. If
you value NMF programs and want to continue to receive the Connective Issues newsletter, join or renew your membership today!
Please don’t let your membership expire on June 30. For less than 10 cents a day you can show that your support counts.
My Support Counts!
I’m an NMF member because:
“When I was diagnosed with
Marfan syndrome in the early
1980’s, I felt very alone. I got
involved with the NMF and
became a Board member.
Being a member of the NMF
has kept me informed about
my own health and given me
the opportunity to help others.”
Cheryl Williams, Oceanside, NY
Member Since: 1992
Only 5% of the Marfan syndrome
and related disorders community
that we serve are NMF members!
My Support Counts!
I’m an NMF member because:
“The NMF has always been
there ready to help me.
When I got sick, they helped
me through my situation.
If you contact them, you
won’t be left without an
answer. The NMF is the
greatest.”
Lucinda Bowers, Boone, NC
Member Since: 2003
It is vital that everyone
who benefits from NMF
programs and services
becomes a member. To
become an NMF member,
go to www.marfan.org and
click on “Donate.” The
suggested membership
contribution is only $35 per
year for individuals and
$50 per year for families.
Please join today!
Monthly Giving Program: Easy Way to Join! Prefer to give monthly instead of in one lump sum? Join the NMF monthly
giving program. You can elect to give $10 or more per month and your gift will automatically be charged to your credit card.
It’s an easy way to support the NMF and spread your gift out over time. Just visit www.marfan.org and click on “Donate.”
Volume 29, No. 2 7

8
Connective Issues
In My Hands at New York Academy of Sciences
On April 21, the New York Academy of Sciences held a special
screening of In My Hands, followed by a panel discussion.
The panel, which was moderated by Richard Murray, Vice
President, U.S. Regional Medical Affairs at Merck, consisted
of NMF Professional Advisory Board members Hal Dietz,
MD, and Ron Lacro, MD; Wall Street executive and Marfan
patient Ben Carpenter; producer Ann Reinking; and directors
Brenda Siemer Scheider and Emma Joan Morris. They discussed
the making of the film, the science of Marfan syndrome
and the ongoing clinical trial of losartan (Merck’s Cozaar) and
atenolol in Marfan syndrome.
Special thanks to Adrienne Burke, director of public
outreach, for the New York Academy of Sciences, who
organized this event. Her interest in Marfan syndrome stems
from her nephew Paul J. Burke, III, who was born in July
2009 with very severe characteristics of Marfan syndrome.
Sadly, he passed away in December as a result of his condition.
“When Adrienne first contacted me, she and her family
were still reeling from her nephew’s diagnosis,” said Jonathan
Martin, NMF Director of Education and Public Awareness.
“I was incredibly moved by Adrienne’s commitment to raising
awareness of Marfan syndrome, especially when I heard the
tragic news of Paul’s untimely death.”
Several NMF Network Groups—including those in
Sacramento, Silicon Valley and Northeast Indiana—have also
Facebook Awareness
Jennifer Aguayo, of Plainfield, IL, used Facebook to educate her
friends and family about Marfan syndrome. Here’s how she did it.
For National Marfan Awareness Month, I wanted to educate
my 260+ friends on Facebook—some of whom had never
heard of Marfan syndrome until 11 months ago when my
son, Aaron, received it as a possible diagnosis. And, many
were still not aware of what the disorder is.
Each day, I posted a status, link or picture with a fact or
story about Marfan syndrome. I numbered each day and
included information about what Marfan is, what body
systems it affects, what it’s like to have the disorder, and
what is expected in a “Marf’s” life. I invited friends to join
the NMF Facebook Cause and directed friends where to
donate. I included links to the NMF’s very informative
video PSA, clips from In My Hands, and to Maya Brown-
Zimmerman’s amazing blog (Musings of a Marfan Mom).
I shared what the NMF has done for our family and the
benefits of joining NMFconnect.
I was so pleased to receive nice comments and kudos
from people in the Marfan community, but I was very sur-
Spring 2010
Standing left to right: Emma Joan Morris, Brenda Siemer Scheider, Richard Murray,
Hal Dietz, MD. Seated, left to right: Ben Carpenter, Ron Lacro, MD, Ann Reinking
focused get-togethers around In My Hands and members
have found it invaluable.
“The documentary was able to put into words what so
many of us have felt,” said Maya Zimmerman, of Milpitas, CA.
“If you have Marfan syndrome, if someone you love has Marfan
syndrome, or if you are curious about Marfan syndrome and
want to learn more, watch this!”
A special screening of In My Hands will be held at the NMF
Annual Conference. All conference attendees are invited to attend.
prised by the response from
my friends and family who
are not directly affected by
Marfan syndrome. Many
were so appreciative to learn
details of the disorder, and
they reposted many of my
postings to share with their
friends. My hope is that I’ve
armed my Facebook friends
with enough information
that they may spot Marfan
Jennifer Aguayo and son Aaron
characteristics in someone
they know and direct them to their physician or the NMF.
Get involved with the NMF on Facebook!
Become a fan of the National Marfan
Foundation and donate to the Official
National Marfan Foundation Cause. Consider “donating your
status” to the NMF on your birthday. You can increase awareness
and raise money for the NMF from the comfort of your
own home!

Kudos to the volunteers who got involved in the Hang-a-
Heart Campaign. They generated awareness about Marfan
syndrome and raised funds by contacting local businesses and
inviting them to hang our red paper heart Marfan mobiles in
exchange for donations from customers. Some volunteers
who got in on the action were:
Sharon Nasutovicz, of Utica, NY, raised $2,604
Mary Taylor, of Powell, OH, raised $580
Susan Axness, of Minot, ND, raised $191
Vicki Smith, of Rose City, MI, raised $100
North Dakota Network Group raised $98
Connective Issues
Do You Have Heart for Marfan? These Volunteers Do!
The NMF is grateful to its many members who initiated public awareness and fundraising campaigns in February, which is
National Marfan Awareness Month. While many people like to kick off their Have-a-Heart efforts during this special month,
you can Have-a-Heart for Marfan all year long. Thank you to the volunteers who participated in two special NMF projects!
Roses Are Red
Violets Are Blue
I Gave to the NMF
to Show My
Love Is True!
Your Name Here
Roses Are Red
Violets Are Blue
I Gave to the NMF
to Show My
Love Is True!
www.marfan.org
Your Name Here
www.marfan.org
Above: Sharon Nasutovicz, of Utica, NY,
who raised more than $2,604, including
$450 at a Hang-a-Heart fundraiser at
Daylight Donuts in New Hartford, NY. On
February 23, the donut shop donated 100
percent of proceeds from that day’s sales of
a dozen glazed donuts to spotlight the NMF
Hang-a-Heart campaign.
Helping Sharon with hearts
for hanging is Chuck
Sadallah of Daylight
Donuts.
Right: Selma Kerzman,
co-leader of the North
Dakota Network Group,
and Sia Ranjibar, owner
of the Coffee Break in
Bismarck, surrounded by
hearts for the Hang-a-Heart
Campaign.
have he rt challenge
Many NMF members stepped up to the Have Heart Challenge
this year and we are so happy they did! In the 3rd Annual
Have Heart Challenge, NMF members asked friends, family
members and co-workers to donate to the NMF, and their
donations were matched by a challenge grant from the Neuco
Family of Naperville, IL and Neuco Inc. Some of this year’s
participants included:
Anne Laffoon, of Sugar Hill, GA, raised $3,160
Anne Hinds, of Louisville, KY, raised $2,050
Josephine Ragusa, of Valhalla, NY, raised $1,208
Melody Franklin, of Fort Wayne, IN, raised $345
Jon & Laura Kroeze, of Mounds View, MN, raised $300
Mary Ann Nowacki, of Toledo, OH, raised $173
Donna O’Sullivan, of Coram, NY, raised $170
Bertha Rayman, of Boynton Beach, FL, raised $125
Ricky Collins of Louisville, KY, raised $110
Mary & Ron Taylor of Powell, OH raised $100
Alicen Martin of Bismarck, ND, raised $80
To date, $7,821 has been raised. It’s not too late to get involved
—take the Have Heart Challenge. You can make a difference!
Volume 29, No. 2 9

10
Connective Issues
Planning for an Emergency
Learning as much as you can about Marfan syndrome or the
related disorder that you have and following the recommended
treatment protocol prescribed by your doctor—medications,
imaging, lifestyle adaptations—can help
you prevent a medical emergency. However,
Marfan syndrome and many of its related
disorders still present challenges that can
result in unforeseen emergencies; the most
life-threatening is a tear in the aorta.
While you are maintaining your preventive
care regimen, it’s also critical to
be ready in case such an emergency arises.
But, where do you start?
The NMF has streamlined the process
for you with an Emergency Information
Packet Template that is available for free
on the NMF website, www.marfan.org.
This template will enable you to have all your personal
Guidelines to Prevent Aortic Dissection Tragedies
Continued from page 1
Ritter Rules are not a part of the ACC/AHA guidelines, but
rather an information tool the Coalition developed for the
public.
“No one has to die or lose a loved one to aortic disease.
With Ritter Rules, people at risk will be informed about
their health and be able to advocate for their families and
themselves,” said Amy Yasbeck, Ritter’s widow and founder
of The John Ritter Foundation for Aortic Health, which is a
member of the TAD Coalition.
As a result of the efforts of the NMF on behalf of the
TAD Coalition, Ritter Rules has already received high profile
national media attention, including The CBS Early Show and
The Doctors on television and Doctor Radio on Sirius XM.
The NMF is grateful to the TAD Coalition members who
have given of their time for these media opportunities, notably,
Amy Yasbeck; NMF Professional Advisory Board member Dr.
Dianna Milewicz; Dr. Kim Eagle, chair of the International
Registry for Aortic Dissection; Dr. Loren Hiratzka, medical
director for TriHealth, Inc.; and Dr. Luke Hermann, emergency
medicine physician at Mt. Sinai Hospital in New York.
More information can be found on the TAD Coalition
website, www.TADCoalition.org. It provides basic information
about aortic disease, including risk factors, profiles of
people who have suffered from aortic dissection, and links to
a wealth of resources. A link to the AHA/ACC guidelines is
also available on the website.
Spring 2010
medical information easily available in a single file. It includes
emergency contacts, allergies, medications and dosage, medical
and surgical history, healthcare proxy and
more.
In addition, the NMF offers a Hospital
Interview Form, which can help you determine
if your local hospital is equipped to handle
aortic emergencies. The form includes a list
of relevant questions about their services
and provides the opportunity for NMF
information about aortic dissection diagnosis
and treatment to be sent to the hospital.
To access the Emergency Information Packet
Template and Hospital Interview Form, go to the
NMF website, www.marfan.org, click on Living with
Marfan Syndrome, then click on Patient Toolkit.
TAD Coalition
The TAD Coalition (www.TADCoalition.org), which was convened specifically
to promote the new guidelines and help assure that people with
aortic disease can get the highest quality of patient care, has three
primary goals:
• Increase public awareness of both genetic and
environmental factors that put people at risk of thoracic aortic
aneurysms and acute aortic dissections
• Provide educational materials concerning the symptoms, clinical
evaluation and medical management of thoracic aortic disease
• Improve the diagnosis and treatment of acute aortic
dissections in the hospital emergency department
“The TAD Coalition is playing a critical role in helping to maximize the
impact of the new thoracic aortic disease diagnosis and management
guidelines,” said Loren Hiratzka, MD, who chaired the writing committee
for the American College of Cardiology and the American Heart
Association and is a member of the TAD Coalition. “While these new
guidelines will inform and update the medical community, the TAD
Coalition will inform the public of risk factors and symptoms for these
aortic diseases. Together, we hope there will be better outcomes and,
certainly, a reduction in the number of deaths from aortic dissection
and rupture due to earlier diagnosis and improved medical management.”
Members of the TAD Coalition include the Ehlers-Danlos National
Foundation, GenTAC (Registry for Genetically Triggered Aortic Aneurysm
and Dissection), International Registry of Acute Aortic Dissection (IRAD),
John Ritter Foundation for Aortic Health, Loeys-Dietz Syndrome
Foundation, National Marfan Foundation, Nebraska Methodist Health
System and the Specialized Center of Clinically Oriented Research
(SCCOR) on Thoracic Aortic Aneurysms and Dissections. The American
Heart Association and the American College of Cardiology have partnered
with the TAD Coalition to promote awareness and adoption of the
new guidelines.
Dianna Milewicz, MD, PhD, chair of the NMF’s Professional Advisory
Board, serves as the chair of the TAD Coalition.

Ritter Rules
Ritter Rules are life-saving reminders to recognize, treat and prevent thoracic aortic dissection,
a deadly tear in the large artery that carries blood away from the heart. Named for actor John
Ritter, who died of a thoracic aortic dissection, Ritter Rules combine knowledge with action.
Know the urgency, symptoms, who is most at risk and which imaging tests are required to
diagnose this medical emergency.
Urgency: Thoracic aortic dissection is a medical emergency. The death rate increases
1% every hour the diagnosis and surgical repair are delayed.
Connective Issues
John Ritter
Pain: Severe pain is the #1 symptom. Seek immediate emergency medical care for a sudden onset of severe pain in
the chest, stomach, back or neck. The pain is likely to be sharp, tearing, ripping, moving or so unlike any pain you
have ever had that you feel something is very wrong.
Misdiagnosis: Aortic dissection can mimic heart attack. Heart attacks are far more common than aortic dissection.
But if a heart attack or other important diagnosis is not clearly and quickly established, then aortic dissection should
be quickly considered and ruled out, particularly if a patient has a family history or features of a genetic syndrome
that predisposes the patient to an aortic aneurysm or dissection.
Imaging: Get the right scan to rule out aortic dissection. Only three types of imaging studies can identify aortic
aneurysms and dissections: CT, MRI and transesophageal echocardiogram. A chest X-ray or EKG cannot rule out
aortic dissection.
Risk Factor: Aortic dissections are often preceded by an enlargement of the first part of the aorta where it comes out
of the heart, called an aortic aneurysm. If you have an aneurysm, you are at increased risk for an aortic dissection.
Risk Factor: A personal or family history of thoracic disease puts you at risk. If you or a family member is living
with an aneurysm or if you have a family member who has had an aortic dissection, you are at an increased risk for
thoracic aortic dissection. You and your other family members should be evaluated to determine if a predisposition
for aortic aneurysm and dissection is running in the family.
Risk Factor: Certain genetic syndromes put you at risk. These genetic syndromes greatly increase your risk for
thoracic aortic disease and a potentially fatal aortic dissection: Marfan syndrome, Loeys-Dietz syndrome, Turner
syndrome and vascular Ehlers-Danlos syndrome.
Risk Factor: Bicuspid aortic valve disease puts you at risk. If you have a bicuspid aortic valve (two leaflets instead of
the typical three), or have had a bicuspid aortic valve replaced, you need to be monitored for thoracic aortic disease.
Triggers: Lifestyle and trauma can trigger aortic dissection. It is possible to trigger an aortic dissection through injury
to the chest, extreme straining associated with body building, illicit drug abuse, poorly controlled high blood pressure
or by discontinuing necessary blood pressure medications. Rarely, pregnancy can trigger an aortic dissection. However,
women with aortic aneurysms and connective tissue disorders who are pregnant are at higher risk of aortic dissection
during late pregnancy and delivery and should be carefully monitored by a cardiovascular specialist.
Prevention: Medical management is essential to preventing aortic dissection. If you have thoracic aortic disease,
medical management that includes optimal blood pressure control, aortic imaging and genetic counseling is strongly
recommended. Talk with your physician.
Volume 29, No. 2 11

12
Connective Issues
Mayor Michael Bloomberg, Karen Murray, Hoda Kotb and Terry Lundgren,
President and CEO, Macy’s and Bloomingdale’s
Randy Falco and Hero with a Heart Award recipient Herbert Pardes, MD
Spring 2010
Randy and Susan Falco with daughter Jessica
Hero
with a
Heart
NMF Chair Jon Tullis and former Board
member Mary Witte
Ben Carpenter and Leonard Girardi, MD
Wayne Isom, MD, and Michael Weamer
Ann Reinking
Carolyn Levering and Al Larson

NMF member Jonathan Lerman with
daughter Sydney
NMF members Sheila McLean, Alix McLean Jennings and Suzanne and Yamil Kouri
Tommy Tune
Hal Dietz, MD, and NMF member Chris Ihde
Connective Issues
NMF members, the Strick Family
NBC’s Jane Hanson, Hoda Kotb and Janice Huff
Henry Rodrique and Dr. Allan Goldberg, of Merck, with (from left) Josephine Grima,
Hoda Kotb and Joyce Goldberg
Volume 29, No. 2 13

14
National Volunteer Network
Scrappy the Dinosaur
Depner Farms, an agri-tourism business in Caseville, MI,
organized a fundraising project through which they auctioned
a 22 ft. dinosaur sculpture (“Scrappy”) constructed from
recycled farm equipment parts. Fifty percent of the proceeds
went to the charity of the buyer’s choice. The highest bidder,
Pamela Deering, of Bad Axe, chose the NMF as the charity
because her son, Ian, has Marfan syndrome. Pamela bid on
Scrappy as a surprise Christmas gift for her husband, Bryan.
The Deerings own and operate D&W Salvage in Bad Axe,
which will (quite appropriately) be Scrappy’s permanent home.
As Pamela said, “Scrappy will be right at home! And, it felt
great to support a cause that affects my family.” Thanks to
the generosity of Depner Farms and the Deering Family, the
NMF received a donation of $1,000.
Awareness at Shawnee State
The Women’s Center
at Shawnee State
University in
Portsmouth, OH,
held a Heart
Awareness Day on
February 5, asking all
employees to donate
$5 each to wear red
in support of the
American Heart
Association’s Go Red
for Women and the
NMF’s Have Heart
Campaign. As a result, $300 was raised for the NMF.
Spring 2010
People People &
Scrappy’s designer, Robert Lefief, Bryan Deering and son Ian Deering
Some of the SSU employees who wore red for the day.
Quilt Fundraiser
Kathy Magee, of San Antonio,
TX, held her 5th annual Have
Heart quilt fundraiser in
February. Kathy wrote to her
family and friends, explaining
Marfan syndrome and describing
how it has affected her life.
She stressed the importance of
Kathy Magee and son Aiden
raising funds for the NMF and
let potential donors know that all who sent a check would
be entered into a drawing to win the quilt she made for this
purpose. She raised $1,130 this year, for a five-year total of
$6,000.
Casual Days at Work
The NMF was chosen as the charity of choice for the month
of February by employees at Great River Medical Center in
West Burlington, IA. On the day chosen, the employees were
permitted to wear jeans with the purchase of a $2.00 sticker.
Thanks to employees Joel and Michele Johnson, who recommended
the NMF for this fundraiser, more than $470
was raised. Through a similar fundraiser, PeoplesBank in
York, PA, raised $520 for the NMF during March.
One Man’s Fundraising Efforts
When 90-year old Art
Berven, of Des Moines,
IA, learned that one of
his young friends from
church, 10-year old
Haley Dostalik, had
Marfan syndrome, he
set out to learn everything
he could about
Haley Dostalik and Art Berven
the disorder. Next, he
arranged for the Dostalik family to speak about Marfan syndrome
at a “Men in Mission” group meeting. Then, with the
help of his two daughters, he spearheaded an Entertainment
Book fundraiser and raised $646 for the NMF. Said Berven,
“I hope in some way these funds help get the word out about
Marfan syndrome.” Kari Dostalik, Haley’s mom, was touched
by Berven’s efforts. She said, “Art is a very special friend of our
family. He started this fundraiser on his own without our
knowledge and help. We are so blessed to have him in our lives.”

Events Events
NMF and TCI: A Lifesaving Partnership
The NMF is grateful to TCI (Tall Clubs International) for their
generosity throughout the year.
• The Portland Skyliners donated $578.00
• Members of the Rocket City Tall Club, Huntsville, AL, donated
change totalling more than $70.00
• The St. Louis Tip Toppers raised almost $90 through their
monthly collection jar and donations from club members.
Get involved with TCI. Find your local chapter at www.tall.org.
Floral Design Fundraiser
On March 11, more than
thirty ladies celebrated the
semiannual Girls Night Out
in Downers Grove, IL, at
Heritage House Florist by
learning how to make spring
floral arrangements and
supporting the NMF. This
Kathy Kisvocil (left) and Stephanie Parkinson
effort was coordinated by
NMF member Stephanie Parkinson, of Downers Grove.
Here’s how it worked: Kathy Kisvocil, Heritage House owner,
hosts two design classes during the event. Stephanie helped to
promote the event and was invited to have a spokesperson talk
to the class about Marfan syndrome. While there is no charge
for the classes, there is a suggested donation, which goes to the
charity. Thanks to Heritage House for their $750 donation.
Fundraising at School
Peter Donato, 15, of
Framingham, MA, and
the Marian High School
Christian Outreach
Group raised $350 by
selling chocolate hearts
during the month of
February.
Motoring for Marfan
Peter accepting the check on behalf of the NMF
In October, Mendie Campbell and family held the 5th Motoring
for Marfan Car and Bike Show in Oilton, OK, in honor of
young Bill Campbell. They raise $1,203, bringing their
total donated to the NMF since 2003 to more than $6,000.
National Volunteer Network
“Change of Heart” Fundraiser
Brothers Andrew and Stephen Melin (age 13 and 11) of St.
Helens, OR, created bags in which people can put their
spare change and distributed them to friends and family in
early February for their annual “Change of Heart” fundraiser.
At the end of the month, Andrew dressed in a banana costume
to help collect the bags. The younger children in the neighborhood
had fun following him around, and the adults asked
why he was dressed up. This gave him an opportunity to talk
about the NMF and Marfan syndrome. Andrew and his family
were thrilled when they counted the change—they raised
$802, which was twice as much as the year before.
Jonnie’s Goodguys
Jonnie’s Goodguys
(jonniesgoodguys.org),
an Indianapolis-based
running club, braved a
30 degree start at the
Indianapolis Marathon
on October 17, 2009,
where they raised $400
for the NMF. The
Goodguys run in races
throughout the country
to raise money and
Some of Jonnie’s Goodguys (L–R): Andi Solero,
Dan Solero, Jessica Soules, Ed Cooning IV,
Russ Hantz, Jeremy Cutler, Steve Hantz
awareness for Marfan syndrome in memory of their friend
Jonathan Miller, who died of an aortic dissection in 2005.
More recently, they participated in the One America Indy
500 Mini Marathon on May 8. Participants of the group will
present their medals from this event to members of the
Central Indiana Marfan Support Group.
Read about more People & Events in the Connective Issues
online supplement at www.marfan.org, including:
• Online awareness conducted by Maya Zimmerman and
Larie Beck
• Brad Giacone’s bowling party
• Pottery decorating by Jennifer Rankins and her children,
Drew and Sarah
• Ethan May’s Bar Mitzvah project
• Laura Cockerham and Gracie’s Corner Candle Shoppe
• Wrapping for the NMF by Nancy Giacone
Volume 29, No. 2 15

16
National Volunteer Network
Massachusetts Chapter
The Massachusetts Chapter hosted an NMF
Resource and Support Meeting on January 24 at Children’s
Hospital’s Waltham location. Close to 40 people attended
the meeting, including special guests Carolyn Levering,
President and CEO of the NMF and Jennifer Grignoli,
NMF Director of Development. Carolyn and Jennifer spoke
about the exciting activities that NMF volunteers are doing
around the country. It was a great way for Chapter members
and the NMF to get better connected with each other.
The chapter’s Second Annual Marfan Awareness Raffle
took place in February and raised more than $2,000.
Mid-Atlantic Provisional Chapter
Volunteers from the Mid-Atlantic Provisional Chapter staffed
a gift-wrapping table at Borders book store in December.
They were able to raise awareness and $211 for the NMF.
In addition, on February 28, the chapter held an awareness
event at the University of Maryland vs. Florida State University
women’s basketball game at College Park, MD. The University
of Maryland allowed the local NMF volunteers to distribute
information to interested fans at the game; there was also an
Spring 2010
Chapter and Network Group
Members of the Massachusetts Chapter
Members of the Mid-Atlantic Provisional Chapter with Florida State Coach Sue Semrau
(front row, right)
announcement made during the game about Marfan syndrome
while the NMF logo was prominently featured on the scoreboard.
Both universities have a special interest in Marfan
syndrome because of tragedy. Chris Patton, a Maryland
basketball player, died as a result of Marfan syndrome in
1976 during a pick-up game and Florida State lost a key
member of their team, Ronalda Pierce, in 2004, to Marfan
syndrome. In honor of Ronalda, Florida State’s Coach Sue
Semrau presents the Ronalda Heart Award each year to the
player that best exemplifies the high standards that Ronalda
demonstrated on and off the court.
Following the game, a local pub, the Hard Times Café,
sponsored a fundraiser, with 20 percent of all income that
evening donated to the NMF. About 80 people came and
$265 was donated to the NMF.
On March 6, the group held a meeting at Johns Hopkins
University featuring a presentation by NMF Professional
Advisory Board member Dr. Hal Dietz, who addressed
Recent Developments in Marfan Syndrome Research.
Northern Illinois Chapter
The kick-off for the Northern Illinois Chapter’s annual
World’s Finest Chocolate bar fundraiser was held on January
24. Nearly fifty attendees enjoyed a chili lunch and picked
up their chocolate bar orders —83 boxes in total were
picked up that day. Through the chocolate bar sales, the
chapter raised $3,000.
On February 16, Chris Malaisrie, MD, Assistant Professor,
Division of Cardiothoracic Surgery at Northwestern
University, gave a presentation to 150 medical students
about aortic surgery and Marfan syndrome at Moraine
Valley College. Members of the Northern Illinois Chapter
augmented the presentation with an information display
about Marfan syndrome and related disorders.
Northern California Chapter
The Northern California Chapter raised more than $400 by
participating in the “Coasters for a Cause” program, offered
by Six Flags Discovery Kingdom in Vallejo. Chapter members
sold discounted Six Flags tickets and received $5 for each
ticket sold. The funds were used to help cover some of the
expenses for the group’s Marfan Syndrome Educational
Symposium held on May 1.
During the summer and fall, Northern California Chapter
members will be conducting Marfan education and awareness
during various community theatre productions of RENT in
their area. Anyone in Northern California who wants to

News: Each One Reach One
participate should contact Charlotte Lusschen, the Chapter’s
Community Outreach Coordinator, at 510-582-7433 or
clusschen@aol.com.
Los Angeles/Orange County Network Group
Suzanne Bowman and her son, Patrick, members of the Los
Angeles/Orange County Network Group, created an eyecatching
awareness display for the March performances of
RENT at the Santa Clarita Regional Theatre. Suzanne also
arranged for an ad about Marfan syndrome and the NMF to
appear in the Playbill. At one of the performances, they teamed
with Al Larson, father of RENT playwright Jonathan Larson,
who gave a heartfelt curtain speech, stressing the importance
of early diagnosis of Marfan syndrome.
Members of the Los Angeles/Orange County Network Group at the Marfan syndrome
display at the Santa Clarita Regional Theater
Silicon Valley Network Group
The Silicon Valley Network Group is taking advantage of the
latest internet technology at their meetings. At their April 17
meeting, they featured NMF Professional Advisory Board
member Dr. Paul Sponseller, from Johns Hopkins Hospital in
Baltimore, who gave a presentation on dural ectasia via Skype.
Eastern North Carolina Network Group
The Eastern North Carolina Network Group welcomed Dr.
Stephanie Burns Wechsler, Associate Professor of Pediatrics/
Cardiology from Duke University, as its guest speaker at its
December meeting. Dr. Wechsler gave a presentation on
Marfan syndrome and answered questions from group members.
On February 27, members of the Eastern North Carolina
Network Group staffed an information booth about Marfan
syndrome at the 2nd Annual Heart Expo at the Greenville
Convention Center. They had a donation jar at the Expo and
raised close to $60 for the NMF.
National Volunteer Network
New Network Group in
Northeast Florida
The newly formed Northeast Florida Network Group is
planning its first meeting for this summer in the Jacksonville
area. Subsequent meetings will be in different locations to
make it more convenient for people in the area. Please contact
one of the co-leaders for more information: John Lamberti,
Co-chair, at 386-313-1073 or kidhi@yahoo.com; and Ridge
Atrews, Co-chair, at 904-509-7547 or atrews@ gmail.com.
Network Group of Omaha
Sherry Heldt, Chair of the Network Group of Omaha, and
her husband Roger made a huge impact on Marfan awareness
when RENT was performed at Omaha’s Shelterbelt Theatre
in Omaha from November 19 – December 30, 2009. They
disseminated information and were permitted to make a curtain
speech about Jonathan Larson, aortic dissection and
Marfan syndrome. Sherry and Roger, who had also told the
audience about their son, Shawn, who died of an aortic dissection
like Larson, were invited to join the cast on stage at
the end of the last performance to sing Seasons of Love, the
show’s signature song. The stage manager told Sherry and
Roger that their presence and Marfan awareness efforts set
the mood for the entire show.
Members of the Network Group of Omaha with the cast of RENT
Ali Khoynezhad, MD, Adult Cardiac Surgeon, Endovascular
Aortic Repair, spoke to the group on January 16 at
Monroe-Meyer Institute in Omaha.
Continued on page 18
For more details about Chapter and Local Network
Groups, go to www.marfan.org, click on “Get Involved”
and select Chapter and Network Group Web Pages.
Volume 29, No. 2 17

18
National Volunteer Network
There are many ways to feel connected to the Marfan community,
both online and in person. The NMF offers a special opportunity
to become involved by joining or creating a community
for people with Marfan syndrome and related disorders in your
geographic area—through the Network Group.
Why do people get involved in Network Groups?
“I enjoy the fellowship and want to be sure members have a
group to turn to,” said Sheila Shawen, Chair, Dayton Network
Group. “I am motivated to be involved with the NMF because
it is the lifeline of hope for curing this disorder and for managing
to cope with it in the meantime.”
NMF Network Groups offer local gatherings so members
can come together in their own communities, without having
to travel a long distance. They are less formal than a chapter;
they have no officers and no bank account. They are also
different from a Support Group, which focuses solely on
psychosocial support with a professional, volunteer facilitator.
Spring 2010
Chapter and Network News
Continued from page 17
North Dakota Local Network Group
The North Dakota Network Group, co-led by Selma
Kerzman and Dena Kemmet, held a Movie for Marfan
night on January 1 at a local theater. They had arranged for
the theater to donate 100 percent of ticket sales for that
night. Nearly 100 people attended and the theater donated
$625 to the NMF.
In addition, Selma was interviewed on a local television
station about her family’s experience with Marfan syndrome.
She also was able to promote the Network Group’s participation
in the NMF Hang-a-Heart Campaign. Group member
Interested in Starting or Joining A Network Group?
Help strengthen the Marfan community nationwide by
getting involved with your local Chapter or Network Group.
Go to the NMF website at www.marfan.org, click on “Get
Involved” and select “Chapter and Network Group Web
Pages” to find opportunities in your area. If none exist,
start a new Network Group! For more information, contact
Kathy Jeffers, Manager of Volunteer Development, at 800-
862-7326 ext. 11 or kjeffers@marfan.org.
Natasha Thorson, of Minot, was also successful in generating
local awareness. She was featured in an article about Marfan
syndrome in the Minot Daily News in March.
Congratulations to the members of the North Dakota
Network Group, who have decided to become the NMF’s
newest provisional Chapter.
“We are excited to see the growth of our National
Volunteer Network, and especially laud the dynamic Network
Groups who are taking on Chapter status,” says Carolyn
Levering, NMF president and CEO. “This gives the group
legal standing in their community and a greater capacity to
address member and community needs.”
Volunteering does wonders for me
and empowers my whole family.
Kathy Magee
Chair, San Antonio Network Group
Meeting topics and activities for Network Groups are
determined by its members. Some Network Groups organize:
• Get-togethers where people share experiences,
information and healthcare resources
• Presentations by local medical experts so that members
can become better educated about Marfan syndrome
and related disorders
• Discussions about improving your ability to be your
own best advocate
• Awareness activities directed toward local medical
professionals or schools in the community (the NMF
has toolkits for various projects)
• Fundraising activities to raise money to advance the
NMF mission of education, support and research
• Fun events so members can simply enjoy socializing
with each other
Local gatherings can create a common bond and a sense of
accomplishment that help individuals better manage their
condition. Connect with the NMF National Volunteer
Network today to enjoy these benefits yourself and help
extend them to others.

Volunteer Profile: Sherry Heldt
Sherry Heldt, of Omaha, NE, joined the NMF in 2001, a year after her son Shawn died of Marfan
syndrome. Shawn had not been diagnosed with Marfan syndrome before he died; after his death, Sherry was
diagnosed with the condition. It was then that she threw herself into learning more about Marfan syndrome
and she searched the internet for whatever information she could find. She got involved in the Heart of Iowa Chapter, and now
serves on its Board of Directors. She also is the founder of the NMF Network Group of Omaha.
What kind of Marfan-related activities have you been
involved in?
My husband Roger and I held a very informal Garden Walk in
2003 to help generate awareness and raise money for the NMF.
Later on, I participated in a panel about Marfan syndrome
that was part of the Heart of Iowa Chapter’s presentation to
medical students at the College of Osteopathic Medicine at
Des Moines University and I have helped with our Walk/
Fun Run.
Local connections are so important to me. That’s why, in
2004, I contacted Kathy Jeffers to start the NMF Network
Group of Omaha. We first met at a local Denny's Restaurant
until a local doctor provided us with a conference room to
use at Monroe-Meyer Institute.
Our group has been involved in gift wrap fundraising at
Barnes & Noble and Younker’s Community Day Event Fundraisers.
We have get-togethers at which we invite medical
professionals to speak to us about Marfan topics ranging from
dental concerns and cardiac imaging, to genetics and ophthalmology
issues, to nutrition and physical therapy. We also take
advantage of the NMF’s resources, with special viewings for
our members of NMF videos, including most recently the
documentary, In My Hands.
We have also tried to leverage local productions of RENT
for Marfan syndrome awareness in our area. We have had an
awareness booth at thirty performances, including those at
Shelterbelt Theatre, Millard North High School (student
edition) and Nebraska Wesleyan University.
Of course we have social gatherings too, such as our
annual picnic and pizza party.
How do you connect with others in the Marfan community on
the internet?
In 2004, I started a Living with Marfan Syndrome site through
MSN. I also joined other online Marfan forums. It was satisfying
to help people get the information they need and for all
of us to be connected. I joined NMFconnect on the NMF
website as soon as it launched and am pleased to see that
there are now more than one thousand members.
How do you think online connections are beneficial?
It is very exciting to connect people who have Marfan syndrome
and related disorders on one site. People who are interested
National Volunteer Network
Sherry Heldt
in learning more can benefit from those who know what it is
like living with a connective tissue disorder. It helps people
eliminate the feeling of isolation; they really aren’t the only
ones out there with this condition. I believe the greatest benefit
of online groups like those on Facebook is the ability to
share experiences and bring about awareness. It also is a good
way to get more people to support the NMF. Word of mouth
certainly travels faster on the ‘net!
What advice do you have for someone with Marfan syndrome
who doesn’t consider themselves internet-savvy?
If you have a computer, get on it! If not, go to the library!
There will be people there to help you and it will definitely be
worth your time. There is so much information to help you
learn about this disorder and there is power in knowledge.
Get connected to 1,229 people (and counting) with
Marfan syndrome and related disorders from the
comfort of your home. Go to www.marfan.org and
join NMFconnect today!
Volume 29, No. 2 19

20
Connective Issues
Medical Education: Models That Work
The NMF frequently hears stories of people frustrated by the quality of care they receive or difficulties they have faced in getting a
proper diagnosis. While there are many excellent healthcare providers, not everyone has access to the level of skill, understanding and
experience that is exemplified by the members of our Professional Advisory Board and Marfan Clinic specialists. The NMF conducts
aggressive outreach to medical professionals, but you can also take action. Here are some examples of a few of the volunteer-run projects
that have worked around the country.
Massachusetts Chapter’s Physician Awareness
Committee (PAC)
In 2006, the Massachusetts Chapter formed the Physicians
Awareness Committee (PAC) to facilitate educational programs
for healthcare providers in their area. The goal is to provide
area health professionals with the most current information
on Marfan syndrome through customized presentations for
various specialists. Presentations focus on early detection of
Marfan syndrome and effective management of the condition.
Through the ongoing relationship with two Marfan
syndrome clinics in Boston, the PAC has partnered with
leading physicians and a nurse who are available to provide
educational programs. In addition, individuals affected with
Marfan syndrome are often on-hand to provide the patient
perspective. The PAC volunteers reach out to education
coordinators at various institutions and work with them to
schedule the presentation.
“The success of this program is due to the partnership
between the volunteers and their local Marfan clinics,” said
Jonathan Martin, Director of Education for the NMF. “It is
sometimes challenging to capture the attention of decisionmakers
in hospitals, but when aligned with qualified doctors
and nurses, volunteers can have great success.”
Jon Rodis, who chairs the PAC, concurs. “The doctor-todoctor
approach of the PAC is truly one of its greatest assets.
Together, we have raised the bar on Marfan awareness in
some of the key medical institutions and medical specialties
within the state of Massachusetts.”
The Massachusetts Chapter has also had success partnering
with local EMS/EMTs, where chapter member Kaddy Ackroyd
has provided the patient perspective at a number of presentations.
The Chapter has also targeted school nurses, with chapter
member Suzanne Kouri, a trained registered nurse, conducting
numerous in-service presentations and conferences.
Heart of Iowa Chapter’s Annual Presentation to
Medical Students
Since 2002, the Heart of Iowa Chapter has regularly been
invited to speak to first and second year medical students at
Des Moines University. Chapter President Teri Dean searched
far and wide to find a clinician/professor who realized that real
life experience is an invaluable tool for educating the doctors
of tomorrow, and finally found Dr. Roberta Wattleworth.
Spring 2010
After Dr. Wattleworth provides
a clinical overview of Marfan
syndrome, Teri and her chapter
volunteers take over.
“Students get exposed firsthand
to a rare condition, see the
variance in the manifestation of
Marfan syndrome, and hear the
personal stories about misdiagnosis
that too often lead to premature
death in young people,” said Teri. Dr. Roberta Wattleworth
Vicki Asbury in Kansas City has also had success with
this model, and Rick Guidotti, of Positive Exposure, has
been partnering with various genetic disorder organizations,
including the NMF, to reach medical students around the
country as well.
School Projects
As part of her Masters in Public Health, Maya Zimmerman
partnered with her Master’s program advisors, the NMF and
the Ohio State University Medical Center’s Connective Tissue
Disorders Clinic to provide education on emergency diagnosis
and treatment of aortic dissection to area triage nurses and
EMS/EMT first responders. As a person living with Marfan
syndrome, she was able to offer a patient perspective amidst
the medical information, greatly increasing the overall impact
of the presentation.
There have also been a number of high school and college
students who have coordinated with the NMF and a local
doctor or nurse to create educational opportunities in their
communities. Among them was Mary Burchett, of Kentucky,
who, as a high school student, partnered with a local physician
to provide continuing education programs to five hospitals
for her Girl Scout Gold Award.
Many other volunteers have coordinated successful projects
to reach doctors and nurses in their areas. The common factor
in each of these successes was the ability to partner with local
medical professionals, who provided the medical information,
while the volunteers offered the patient perspective. This is
the winning combination.
Contact Jonathan Martin, NMF Director of Education, at
jmartin@marfan.org if you have a medical partner and need
help getting started.

26th Annual Conference
Continued from page 4
An Important Appeal: The NMF Conference
Scholarship Program Needs Your Support
Each year the NMF provides assistance through a Conference
Scholarship Program to help individuals and families come
to conference. Many in our Marfan community have limited
financial means, little or no health insurance coverage or do
not have access to specialty Marfan care at home. The number
of applications we receive for scholarships increases every year.
Especially in these tough times, help is needed.
The teen program is the best part of
the conference. It was great for my
son’s self-esteem and, for him, the
value of meeting others with the same
issues was priceless.
Joanne Jordan, Corona, CA
There are several conference scholarship funds, including
one named in memory of Julie Kurnitz, a long-time NMF
member and Board member who died in 2004. Julie always
valued the NMF Annual Conference and the connections made
there with her Marfan family. Today, Lyz Kurnitz-Thurlow
continues to work hard to support the Foundation, in particular
the program that meant so much to her sister. The
Message from the NMF President & CEO
Continued from page 3
The death of Jonathan Larson in 1996 and the subsequent
investigation by the New York State Department of Health
(NYS DOH) launched the NMF into its first partnership in
this campaign: a collaborative effort with the NYS DOH to
create educational materials on Marfan syndrome and aortic
dissection. From our work with the Larson family, to our
collaboration with the Emergency Nurses Association and
National Society of Risk Managers to our success in the media
(including being part of the story line on NBC-TV’s ER in
2001), we have been able to successfully expand our Emergency
Medicine Campaign and increase its impact.
The NMF envisioned an aortic disease coalition as a
strategy for continuing the momentum of our Emergency
Medicine Campaign. To realize this vision, the NMF convened
key opinion leaders during the American Heart Association’s
Scientific Sessions in November 2008. Included were members
of our PAB, a representative of the National Heart, Lung,
and Blood Institute, and leading medical experts who were
on the writing committee for the guidelines. Following this
meeting, the Thoracic Aortic Disease (TAD) Coalition was
Connective Issues
letter she sends to her friends and family to raise money for
the Julie Kurnitz Conference Scholarship Fund expresses
how important the conference was to her sister. She writes:
Julie benefited from all the medical advances, and would be
thrilled at the ongoing advances. But, what she also benefited
from was the Annual Conferences…. People with Marfan
syndrome are able to schedule appointments with all sorts of
doctors who deal with the various problems and needs of
patients with Marfan syndrome. For people who don’t live
near big, well-informed, medical centers, this is a special
opportunity. But then—the Marfs get to meet with each
other, and go to workshops and discussions, and laugh and
cry and bond and compare notes and love each other. I was
jealous when Julie talked about her genetic family, but also
so glad she had them.
The Annual Conference is priceless for those in the Marfan
community, but the Conference Scholarship Program can only
happen through your generosity. A donation of any amount
helps, so please give whatever you can. Mail your check to
the NMF, 22 Manhasset Avenue, Port Washington, NY 11050
or donate online at www.marfan.org. Thank you for helping
support this important program.
established. When the guidelines were published this spring,
the Coalition was poised to maximize them and communicate
key messages that directly benefit the Marfan syndrome and
related disorders community, as well as the broader population
of people who are at risk of aortic dissection.
We continue to work hard every day to prevent avoidable
deaths in hospital emergency departments. We hope you will
learn from the guidelines and use Ritter Rules (on page 11)
to help you advocate for yourself and your loved ones.
You are an important part of our efforts. Programs like
the Emergency Medicine Campaign can’t happen without
your support. Our Membership Appeal is in progress right
now (see page 7). Please visit www.marfan.org to become a
paid member today. Through our diverse array of programs,
we will continue to work hard to increase early diagnosis and
prevent deaths in hospital emergency departments. It’s what
we do every day.
Sincerely,
Volume 29, No. 2 21

22
Connective Issues
Heartworks Galas
Continued from page 1
on-site Fund-A-Need added to the sparkle of the evening.
New York City Mayor Michael Bloomberg was again
on-hand as the honorary chair of Heartworks. He presented
the Founder’s Award to NMF Board member Karen Murray,
President, VF Sportswear, who has served as corporate host
of Heartworks since its inception.
Hero with a Heart Awards were presented to two distinguished
doctors: Dr. Duke Cameron, Professor of Cardiac
Surgery and Pediatrics, Johns Hopkins Hospital, and Dr. Herbert
Pardes, President and CEO, New York Presbyterian Hospital.
The NMF also recognized the 10th Anniversary Circle of
Honor, all previous recipients of the Hero with a Heart Award.
Ben Carpenter, CRT Capital
Paul Charron, former chairman of Liz Claiborne
Dr. Richard Devereux, New York Presbyterian/Weill Cornell
Dr. Hal Dietz, Johns Hopkins Hospital
Susan Falco and Randy Falco
Tenth
Anniversary
Heather Holmes Floyd
Dr. Valentin Fuster, Mt. Sinai Medical Center
Dr. Leonard Girardi, New York Presbyterian/Weill Cornell
Medical College
Dr. Antonio M. Gotto, Jr., DPhil, Weill Cornell Medical
College
Dr. O. Wayne Isom, New York Presbyterian/Weill Cornell
Medical College
Allan Larson
The late Dr. Victor A. McKusick, Johns Hopkins Hospital
Merck & Co.
Ann Reinking, Tony Award winner
Dr. Mary Roman, New York Presbyterian/Weill Cornell
Medical College
Dr. Paul Sponseller, Johns Hopkins Hospital
Michael L. Weamer, CAE, American Heart Association
Spring 2010
Circle of Honor
Circle
of Honor
Another highlight of the evening was an exciting live auction,
which featured tickets to the Super Bowl, tickets to the
American Idol finale, a trip to Turks and Caicos and a home
dinner party with celebrity chef, James Briscione. The silent
auction was also a success. Approximately $90,000 was raised
that night from the auctions.
The evening’s Fund-A-Need, which is in its fifth year at
the Heartworks gala, featured the story of 23-year-old Jessica
Falco, the daughter of Randy and Susan Falco, who has bravely
faced several medical challenges with Marfan syndrome and is
now a college graduate. Her parents kicked off the challenge
with a generous $15,000 donation and others followed suit,
resulting in nearly $100,000 from this appeal.
Broadway legend Tommy Tune entertained the audience
with a fantastic performance. Then the evening closed with a
retrospective video highlighting ten years of gala entertainment
and support from the Broadway community. (This video, and
the tribute videos for the Hero with a Heart Award recipients,
can be viewed on the NMF channel at www.YouTube.com.)
Heartworks St. Louis
NMF Professional Advisory Board member Alan Braverman
and his wife, Becky, hosted the second annual Heartworks
St. Louis on March 6, honoring the esteemed surgeon Dr.
Gregorio Sicard, Executive Vice Chairman of the Department
of Surgery and Chief of the Vascular Surgery Section at
Washington University School of Medicine, Barnes-Jewish
Hospital.
Nearly 200 people, including many members of the NMF’s
St. Louis Chapter, attended the event, which was held in the
spectacular Starlight Ballroom at the Chase Park Plaza. The
evening was capped off by dancing to the sounds of the Ralph
Butler Orchestra.
The NMF is grateful to the St. Louis medical community
for supporting the event again this year.
Carolyn Levering, Hero with a Heart Award recipient Gregorio Sicard, MD,
and Alan Braverman, MD
Heartworks Westchester
Hero
with a
Heart
NMF member Barbara Lerman and her family and friends
were planning for the third annual Heartworks Westchester
as this issue went to press. The event is held in honor of
Sydney Lerman, the seven-year-old daughter of Barbara and
her husband, Jonathan (and granddaughter of NMF Board
member Jerry Lerman and his wife, Judi). A fun-filled event
is planned for the Metropolis Country Club in White Plains,
NY, on May 22. Look for photos and highlights in the next
issue of this newsletter.

We Remember and Honor . . .
Connective Issues
The National Marfan Foundation is grateful to its members and friends who have made contributions in memory of, or in
honor of, the following individuals. These donations are fully appreciated and support our mission to save lives and enhance the
lives of those affected by Marfan syndrome and related connective tissue disorders.
In Memory of:
My Son, Larry
Your Dad, Manny
Your Husband, Chuck
Your Husband, Tim
Your Beloved Sister, Ruth
Adrian Adame
Carol Adame
Elias Adame
Antone Aguiar
Alice C. Andersen
Kaitlyn Anthony
Richard J. Armstrong
Guy Arnold
Nancy Avis
McKenzie Bailey
Dear Daughter, Elissa
Faith Bell
Devoted Father, Max
Belopolsky
Derek Benham
Robert Berst
Daniel Bevis
Grete Bode
Scott Boegle
Madison Boudreaux
Walter T. Boyer, Sr.
Dave Bressen
Manuel Broady
Irene M. Brown
Carol Jane Camp
Gabrielle Ruelos Cannistraci
William P. Cavanaugh, Jr.
Sarah Cayo
Marie Louise Clement
Cenac
Charlie Ciccariello
Steve Ciccariello
Edward James Davis
Vivian Hedwig Pollari
Davis
Peter DeMattia
Louis DeSousa
The Doyle Family
Sonny Edrich
Amy Elster
James Elster
Sam Elster
Bill Feinstein
Erwin, Larry and Bill
Feinstein
Phyllis Frederickson
James K. Gann
William Gilmore
Rachel Yael Goodman
Andrew Gross
Virginia Handley
Simon Harris
Ima Lee Beougher Heier
Shawn Heldt
Marilyn Higdon
David W. Hill
Jim Hinds
Bill Holmes
John Howell
Daryl Johnson
Willard Johnson
Frank Katz
David B. Knapp
Julie Kurnitz
Victoria Jean Kvamso
Matthew Langmaid
Gary Luedde
Lizbeth Lyons
Norma Makanoff
Lynn Malizia
Joey Mazzuca
Eileen McCarthy
Ronnie Mittman
Zachary Haines
Moorhead
Luci Morehead
Joe Neustadt
Terry Newlin
James O’Keefe
Stephen Parfenoff
Christopher Paulsen
Cora Perkins
Merv Peterson
Michelle Pinard
Kevin Rado
Houston Rains
Mel Rapton
Andrew J. Rexroth
Kevin M. Richard
Dylan Rohrer
Maryann Roney
Patrick Roulston
Deborah Sahli
Mildred Cohen Scherzer
Valerie Schoenmann
Spencer N. Sellas
Michael Sidrow
Christina Sims
Lester I. Smith
Shirley Snyder
Leon Stein
Dennis Stelmach
Bridget Stewart
Carolyn Stricklin
Glenn K. Style
Stanley Tobin
Marge Waigand
George Wakat
Gertrude Wiedemann
Eric L. Wika
Evalyn D. Zimmerman
In Honor of:
Mike Adolf
Stephen & Brenda Aigner
Matthew Albanese
Ari
Austyn N. Bevis
Dr. Braverman & Staff
Carol & Owen Brown
Livia Cangemi
John Cardillo
Mrs. Anne Chudnofsky
Louise Chudnofsky
Mrs. Wendy Davis
Jason Decker
Alice Dermer
Peter Donato
Abigail Eaton
The Edrich Family
Lindsay Fabri
The Fink Family
Rose Fisher
Joseph Gagliano, Jr.
Gertrude Glick
Haley Blair Golden
Joel Green
Matt & Shauna Green’s
forthcoming child
Connor Hajj
Angela Hebert Held
Sherry Heldt
Lee & Lisa Howell
Sam Howell
Maxie Howlett
Eileen Ilberman
Gail & Howard Jehan
Jo Anne Welch Jones
Brittney Klein
Mr. & Mrs. David Knapp
Kevin Mahony
Harold & Barbara Makanoff
Clare Meyers
Ilana Mysior
Dr. Donald Novy
Ty Nugent
Ryan O’Sullivan
Casey & Karen Paradine
Todd & Marisa Pawell and
Family
Kerry Piasecki
Marilyn Prindle
Dr. Pyeritz and Dr. Bavaria
Drew & Sarah Rankins
Kenneth Robins
Timothy, Shaun, Joshua &
Christopher Roman
Mr. & Mrs. Peter Roos
Felizia Marjorie Rosenthal
Mrs. Thelma Rosenthal
Samantha from Austin
Bill & Rita Schrandt
Dr. & Mrs. Nicholas Sellas
Andy & Angela Shaw
Cara Shaw
Colin Shields
Ralph & Barbara Slater
Mr. & Mrs. James Spaulding
David Staton
Russell Ward
David Warren
The Warren Family
Scott & Andi Maron Weiss
The Welte Family
Emily Wheeler
NMF Members and Volunteers Raising Money through Firstgiving
Alix McLean Jennings with her
husband, Ezra, and daughters
Cassie, left, and Penelope
Alix McLean Jennings, whose
three-year-old daughter, Cassie,
has Marfan syndrome, ran in
the More & Fitness Women’s
Half Marathon in Central Park
in New York City on April 25,
to raise funds for the NMF.
Alix created a fundraising page
through Firstgiving and shared
the link to her page with everyone
she knows, and her friends
and family shared it with their
networks as well. As a result of
their generosity, the total raised
as this newsletter went to press
was $30,567.
Jessica Berklite, age 11, and her mom Kelly, of Centreville,
VA, created a Firstgiving fundraising page to raise funds for
the NMF. To date, they have raised $1,445.
Heather Earnhart, of Chicago, IL, created a Firstgiving page
in honor of her five-year-old daughter, Gabriella, asking people
to Have a Heart for Marfan. Thanks to donations from family
and friends, $1,609 has been raised for the NMF so far.
Stephanie Parkinson of Downers Grove, IL, raised $1,310
for the NMF through her Firstgiving page, plus $1,920
through other online efforts.
Ellen England, leader of the Northeast Indiana Network
Group, created a group page through Firstgiving to raise funds
for Have Heart; they exceeded their goal by raising $530.
Creating a Firstgiving page to raise money for the NMF is easy and helps raise critical funds for NMF
programs. To learn how, contact Cathie Tsuchiya at 800-8-MARFAN, ext. 13, or ctsuchiya@marfan.org.
Volume 29, No. 2 23

22 Manhasset Avenue
Port Washington, NY 11050
Early Bird Registration Ends May 31
HOUSTON!
JULY 8–11!
BE THERE!
Early Bird discount registration
and registration for children
and teens end on May 31.
Adults may register any time
after May 31 including on-site
at the Conference. Turn to
page 4 for more information.
Non Profit Org.
U.S. Postage
PAID
RIPON, WI
PERMIT No.100
I highly recommend the annual conference! It
was wonderful to talk with people who are just
like us. The workshops were enlightening and it
was amazing to talk to the Marfan experts one
on one. Overall, it was a great experience!
Lori and Brian Bates, with their sons, Luke (left) and Andrew