Reflex Sympathetic Dystrophy Association of America

Reflex Sympathetic Dystrophy
Association of America
2004 Annual Report
Working to raising awareness of reflex sympathetic dystrophy (RSD) and
complex regional pain syndrome (CRPS) since 1984

I have CRPS in all 4 extremities: upper back, back
of head, ears, lower abdomen. I really look forward
to the newsletter and also the e-mail alerts... I think
it very important to support all that you do for me
....if only 15 dollars a year spent with medical professionals
could do for me what this website does
Thanks so much!
Terry Lundon
Aliso Viejo, Ca
The RSDSA website, newsletters, brochures, and
other tools, not to mention the dedication of
people who understand the ramifications of the
devastating pain brought about by reflex sympathetic
dystrophy syndrome, are responsible for letters like
this one from our members. This, and many others,
underscore our success in meeting our mission, year
after year.
In many ways, 2004 was an exceptional year for the
Reflex Sympathetic Dystrophy Association of
America (RSDSA). In September, we hosted our
Second International Update on CRPS/RSD in San
Diego—our first West Coast conference. Comments
from presenters and attendees alike confirm the
importance of our vision to educate as many healthcare
professionals as possible. This was reinforced by
the response to a mailing of a telltale signs handicard
to the 57,000 members of the American Academy of
Family Physicians. Subsequently, we mailed the card
to members of the American Academy of Physician
Assistants. Additional comments from attendees at
the conferences where we exhibit indicate a need for
more educational initiatives.
Mission Statement
Our mission is to promote public and professional
awareness of Reflex Sympathetic Dystrophy
Syndrome (RSD), also known as Complex Regional
Pain Syndrome (CRPS), and to educate those afflicted
with the syndrome, their families, friends, insurance
and healthcare providers on the disabling pain it
What’s in a Name?
Because the medical community has almost universally
accepted Complex Regional Pain Syndrome (CRPS) to
describe what we know as reflex sympathetic dystrophy,
the RSDSA has chosen to use the term CRPS/RSD in all
of our publications.
causes. We encourage individuals with CRPS/RSD to
offer each other emotional support within affiliate
groups. And finally, we are committed to raising
funds for research into the cause and cure of
CRPS/RSD.
How we meet our mission
We talk to people who have CRPS/RSD, their families,
and their friends. Every year, we help thousands
of people find treatment through physician
referral services and via support groups. Although
RSDSA cannot recommend specific treatment for
people with CRPS/RSD, we do provide information
on clinical practice guidelines and we are in constant
contact with people with CRPS/RSD, to offer ideas
and, most of all, hope and support.
Mary Beth Kenny Ludington, Linda Lang, Idamarie
Scimeca Duffy, Gayle Bonavita, and Wilson Hulley,
along with executive director Jim Broatch, answer
countless e-mails, letters, and phone calls. Patients
are concerned with medical treatment and research,
but also want information on dealing with insurance
companies, managing the financial devastation that
accompanies their disability, negotiating the myriad
government services, and more.
We provide tools to educate people who have
CRPS/RSD and their friends and family. Using our
quarterly newsletter, the RSDSA Review, a bi-monthly
Support Group Newsletter, and our comprehensive
website, we provide the most up-to-date information
on medical news, research, treatment and special
events for the CRPS/RSD community. Approximately
24,000 people visit our website every month.
Also, we send electronic alerts, small news releases
The Cover:
The RSDSA is an amazing group of people who work
tirelessly to raise awareness of CRPS/RSD.
Clockwise from top left: Jenny Dye (left) and Barbara
Schaffer of the RSDAware Support Group at their annual
golf outing, which raises funds for CRPS/RSD
research; board member Wilson Hulley and Star, his
service dog; 2004 Bounty of Hope dinner and Silent
Auction organizers Mary Beth Ludington, Nick Warnock
Master of ceremonies and special guest), Betty Maul,
and Sharon Weiner; Linda Lang, board member and
author; Paul Charlesworth, RSDSA Board President.

or requests for information to an an e-mail list of
approximately 1,500 people who have CRPS/RSD or
are interested in the syndrome.
In addition, we continually update our publications
and brochures, including In Pain, Out of Work, Can't
Pay the Bills, a resource directory that can be downloaded
from our website and is also available in hard
copy. Our other important tools include Recognizing,
Understanding, and Treating RSD/CRPS, Treating
Complex Regional Pain Syndrome: A Guide for Therapy,
and Helping Children/Youth With RSD/CRPS Succeed in
School.
We educate physicians and other healthcare professionals.
In addition to conferences and mailings,
RSDSA produced a new exhibit banner to call attention
to the diagnosis, treatment, and management of
CRPS/RSD. In 2004, we exhibited at several professional
medical conferences, including: the American
Physical Therapy Association, American Pain Society,
National Athletic Trainers Association, American
Academy of Physical Medicine and Rehabilitation,
American Public Health Association, National
Workers Compensation and Occupational Medicine
Seminar, and the National Chronic Pain Society
Meeting.
In 2004, we initiated a partnership with several
CRPS/RSD support groups around the country to
exhibit at state school nurses conventions. We paid
for booth space and provided materials, and the support
groups manned the booths.
Special Events
The annual Bounty of Hope
awards dinner, held every
November in New York City,
is an opportunity to honor
individuals who have made a
difference to the CRPS/RSD
community and educate
attendees who come from a
variety of backgrounds.
In 2004, Nick Warnock, one of the finalists in the
original Apprentice TV series was the master of ceremonies.
Mary Beth Kenny Ludington chaired the
silent auction committee and Betty Maul and Sharon
Weiner go chaired the overall event. It is through the
herculean efforts of our volunteers that this event
continues to grow.
The Scientific Achievement Award was presented to
the chairs of the RSDSA Scientific Advisory
Committee, R. Norman Harden, MD and Srinivasa
N. Raja, MD. In addition, we honored the RSDAware
Support Group in Pennsylvania for their achievement
in raising awareness of CRPS/RSD in their state. Most
notably, the group was instrumental in getting an
RSD Awareness Bill passed and signed into law.
In addition, support-group events, such as the
RSDAware annual golf outing, have raised research
funds.
Bounty of Hope 2004 Hero of Hope Barbara Schaffer
(representing the RSDAware Group), Nick Warnock,
Master of Ceremonies, and Norman Harden, MD, who
shared the Scientific Achievement Award with
Srinivasa N. Raja, MD (not pictured).
Jim Broatch, executive director, RSDSA; artwork from
the New Yorker is only one of more than 100 items in
the annual silent auction.

I was able to get SS Disability the first time I
applied because of your site! The State assigned
me a caseworker. I explained my condition and
gave him the code so he was able to find it in his
book of covered disabilities. It helped him understand
it better too. So I just wanted to say,
“THANK YOU SO MUCH!”
Debra Sjolseth
Palmer, Alaska
We depend on corporate support
Jim Broatch works with foundations, corporations
and individuals to fund our projects. Celgene, the
Medtronic Foundation, Endo Pharmaceutical, Purdue
Pharma, Pfizer, Elan, and several other organizations
have generously supported our initiatives.
We fund research
RSDSA is the only national organization that actively
funds more than $75,000 annually for CRPS/RSD
research and has to date funded $723,665 in research
grants.
In 2002-2003, we funded four major university-based
research studies, a total of $101,265 in research support.
These include creation of a rat model for CRPS
Type I/RSD for use in research to treat CRPS/RSD at
the nerve Injury Unit at Massachusetts General
Hospital in Boston; measuring changes in CSF
cytokine levels in RSD at Drexel University School of
Medicine, Philadelphia; and collecting epidemiological
and clinically relevant information from people
with CRPS/RSD via the Internet at Johns Hopkins
School of Medicine, Baltimore. In 2004-2005, we
funded new evidenced-based clinical practice guidelines.
Goals
For fiscal year 2005, we are funding the writing and
editing of revised Clinical Practice Guidelines, which
will provide much-needed information for the medical
community. A separate grant has been designated
to validate four diagnostic criteria for CRPS/RSD.
This information is needed so that the International
Association for the Study of Pain (IASP) will adopt
them.
RSDSA Leadership
RSDSA is led by an all-volunteer Board of Directors comprised
of CRPS/RSD, people with CRPS/RSD, parents of
individuals with CRPS/RSD, physicians, representatives
from the pharmaceutical industry, and business people.
The board meets annually to formulate long- and shortrange
strategic plans. Board members pay their own
travel expenses to attend these meetings.
Board officers
Chairman of the Board
James E. Tyrrell, Jr., Partner in Latham & Watkins
President
Paul R. Charlesworth, (parent of a person with
CRPS/RSD)
Treasurer
Donald F. McKee, Managing Director, Capstone Financial
Management
Secretary/ Patient Representative
Mary Beth Kenny Ludington (person with CRPS/RSD)
Members
Bradley S. Galer, MD, Vice President of Scientific Affairs,
Endo Pharmaceuticals
Peter A. Moskovitz, MD, physician and author
Linda Lang, businesswoman, author, and a person with
CRPS/RSD
Wilson H. Hulley, Disability Advocate, served on the
President's Commission for Employment of People With
Disabilities; a person with CRPS/RSD
Pierre LeRoy, MD
Donald C. Manning, MD, PhD, Celgene Corporation
Executive director
James W. Broatch, MSW
In addition, we are working on an initiative to educate
both the medical community and consumers
about the suggested link between athletic injuries
and subsequent surgeries and the development of
CRPS/RSD.
RSDSA will also launch a new quarterly newsletter
for risk managers and case managers to educate
these sectors on the importance of early diagnosis
and appropriate treatment for people who develop
CRPS/RSD.
Most important, we will continue on our mission to
educate the community at large about CRPS/RSD
through our publications, our website, and increased

RSDSA 2004
Accomplishments
•
• Spent $100,000 for research, including creating an
on-line survey to collect epidemiologic and clinically
relevant information from people with CRPS/RSD.
• Launched a direct mail campaign to the 57, 000
members of the American Academy of Family
Physicians with an offer of a complimentary copy of
Living with RSD, a comprehensive resource on
CRPS/RSD. We mailed more than 600 books! The
physicians also asked for additional telltale handicards,
e.g. for 45 residents at the Family Medicine
Program at Florida Hospital, 150 handicards for the
Maine Academy of Family Physicians meeting, and
for assistance in developing a CME course for the
Mississippi Academy of Family Physicians.
Dr. Whaty Jones of Edgewater, Maryland
wrote, "I received a sample of the card
the other day. Today I 'caught' a WC
(Workers Compensation) patient with
'telltale' signs. I gave her my only copy
of the card and referred her to the pain
specialist. Please send me 50 more
cards."
Building on this success, we sent a similar informational
mailing to 12,000 members of the American
Academy of Physician Assistants and Physician
Assistants. The package consisted of the two-sided,
laminated Handicard that depicts the 11 telltale signs
of RSD/CRPS with a pain assessment scale on the flip
side.
• Updated and printed In Pain, Out of Work, Can't
Pay the Bills, a resource directory for our members
who suffer financial devastation as a result of RSD.
This directory is "live' on the Internet and is now
available in hard copy. We distribute it at medical
meetings, to crisis hotlines, libraries, State
Department of Social Services, and other referral
sources.
• Revised and printed Recognizing, Understanding,
and Treating CRPS/RSD, an informational brochure
particularly valuable for those newly diagnosed with
the syndrome
Jenny Dye, Barbara Schaffer, and Richard Ulrich,
RSDAWare Group, were instrumental in getting
Pennsylvania House Bill 99 passed.
Conducted the Second International Update on
RSD/CRPS in San Diego, Sept. 11-12. This two-day
CME-accredited conference educated more than 200
physicians and people with CRPS/RSD. Their feedback
underscores the need for continued education
on the diagnosis and treatment of this devastating
syndrome. The presentations have been archived on
our website (www.rsd.org) and can be downloaded.
• Created a new exhibit booth with the headline, "A
Minute of Your Time… Can Prevent a Lifetime of
Suffering." We used it at several conferences and conventions,
including the American Physical Therapy
Association, American Pain Society, National Athletic
Trainers Association, American Academy of Physical
Medicine and Rehabilitation, American Public Health
Association, National Workers Compensation and
Occupational Medicine Seminar, National Chronic
Pain Society Meeting, National Workers'
Compensation and Disability Conference, and
numerous state school nurse association meetings.
• Supported RSDSA members and their families
through the bi-monthly Support Group Newsletter, the
quarterly RSDSA Review and our website. In 2004,
approximately 24,000 people visited the site each
month.
• Worked with state and local organizations to help
pass CRPS/RSD awareness and education legislation.
In 2004, RSDAware and its members were instrumental
in passing Pennsylvania House Bill 99, which educates
health care workers and the public about
CRPS/RSD. The group is working with the
Pennsylvania Department of Health to make sure
that the bill is implemented and, with the help of
RSDSA, to develop the program as a model for other
states.

Financial Information
RSDSA is a 501 c (3) not-forprofit
organization; it is
audited by Solakian, Caiafa &
Company, LLC, Branford,
Connecticut.
Revenue
RSDSA is funded primarily
through grants, contributions,
member dues, program fees,
and special events. The
Bounty of Hope is our single
biggest fundraising event.
Without the major grant support
from pharmaceutical
and other companies, as well
as private and corporate
foundations, many of our
projects would never happen.
Member Dues
5%
Grants
5%
Conferences
6%
Revenue and Support
$633,342
Special Events
22%
United Way
2% Investment Income
1%
Royalties
1%
Contributions and
Bequests
58%
Expenses
In fiscal year 2004, our revenue
was $633,342 against
expenses of $545,161.
RSDSA is proud of what it
produces with its revenue.
Approximately one fifth of
our expense monies fund
research. Another 70% of the
expenses go toward services
to the RSD community,
through education, literature,
our website, and other collateral
materials.
Fundraising
9%
2004 Expenses
$545,161
Management and
General
4%
Research Grants
19%
Program Services
68%
99 Cherry Street
MIlford, CT 06460
T 203.877.3790 F 203.882.8362
www.rsd.org