New England News Fall 2011 - Huntington's Disease Society of ...

New England News 

Fall 2011 

In This Issue….. 

Madison Avenue Gala: an evening to remember. 

Upcoming Events……..2 & 3 

NE Ed Day……………..4 & 5 

Maher Dinner…………….…6 

Hunting for a Cure…………8 

Rhode Island Walk…….…..9 

Planning Ahead….…...…..10 

Talk to our Social Worker..11 

Advance Care……....12 & 13 

Resources………………...14 

Contact Us...………....…...15 

NEW 

WEBSITES 

OUR 

MASSACHUSTTS 

CHAPTER 

& 

NEW ENGLAND 

AFFILIATES 

NOW 

HAVE 

THEIR 

OWN 

WEBSITES! 

See page 15 

in this Newsletter. 

On May 13, 2011, the Seaport World Trade 

Center’s Cityview Ballroom was transformed 

into a scene from the early sixties as over 230 

guests raised a record-breaking $72,000 to 

support HDSA’s fight to improve the lives of 

people affected by HD and their families. 

Guests danced to the sounds of the Al Vega 

Trio and enjoyed an evening of fine dining and 

cocktails as they generously raised the 

incredible figure through donations, live and 

silent auctions. 

The gala’s masters of ceremonies, NECN 

news anchor Chet Curtis (pictured right), 

opened the evening by introducing gala 

co-chairs Alexis Dunn, (pictured below right) 

and Rachel Allen. We also had a special 

introduction from Colleen Kennefick of 

Lundbeck Pharmaceuticals. 

The evening also featured charismatic 

Auctioneer Dan Flynn (pictured below left). 

Flynn’s energy and humor may have rallied the 

200 plus guests but items, such as a signed 

2011 Boston Celtics Basketball and other 

exclusives, set the precedent for the evening. 

However, foreshadowing the record-setting 

total, the highlight of the live auction came when a fishing excursion off of Chatham, 

Massachusetts went for $3,100, the highest bid in New England Region history. 

The Huntington’s Disease Society of America’s stylish “Madison Avenue” Gala was more 

than an evening to remember, it was one for the record books. We would like to thank 

Sandy Will of A.A. Will 

Corporation for his generous 

support as well as all 

corporate and individual 

sponsors that helped make 

this event a success. 

The gala was such a success 

because of generous donors 

and excellent committee 

members, including Kaitlyn 

Bolan, Stacy Feldt, Kathy 

Hackett, Terry Joyce, Ryan 

Lallier, and Alison White. We 

also want to extend our 

gratitude to the following 

Continued on page 7

Upcoming Events 

Fall Walks 

All Walks Begin at 10:00 AM-Registration 9:00 AM 

(Unless otherwise specified) 

All walks are 3 miles 

Saturday, September 17, 2011 

5th Annual HDSA Boston Walk-A-Thon 

Pope John Paul Park 

Hallet Street 

Boston, Massachusetts 

www.firstgiving.com/HDSA-MA/boston-walk 

14th Annual Kevin Ganley Walk 

Heritage State Park at the Sampus Pavilion 

Route 113 (The Boulevard) 

Lowell, Massachusetts 

www.firstgiving.com/HDSA-MA/lowell-team-hope-walk 

4th Annual HDSA Seacoast Walk 

University of New Hampshire 

Student Recreation Center (Next to Whittemore Center) 

Durham, New Hampshire 

www.firstgiving.com/hdsa-ne/teamhopewalk-NH 

1st Bennington Vermont Walk 

Bennington Village Fire Department 

133 River Street 

Bennington, Vermont 

www.firstgiving.com/hdsa-ne/team-hope-vermont 

Sunday, September 18, 2011 

5th Annual Team Hope Walk Lighthouse Point Park-Harbor Pavilion 

New Haven, Connecticut 

www.firstgiving.com/hdsa-ct/team-hope-walk 

1st Annual HDSA Maine Walk/Bike/Fun-Run 

Event Begins at 9:00 AM 

Registration 8:00 AM 

Down East Sunrise Trail 

Washington Junction Road 

Ellsworth, Maine 

www.firstgiving.com/hdsa-ne/mainewalk 

Online Fundraising 

Set up your own website fundraising page, and make it easy for sponsors to donate online using a credit card. 

To Set Up Your Own Walker Website: See the firstgiving link listed for each walk. 

For more information about the walk in your area go to your NEW local website! 

(See page 15 for a complete listing of the new sites.) 

You may also call or email Virginia at 888-554-8102 extension 13 or vgoolkasian@hdsa.org 

2 HDSA New England News Fall 2011

Upcoming Events 

COMING TO NEW ENGLAND 

IN 2012 

HDSA LIVE MUSIC EVENTS ! 

Woody Guthrie Tribute 

An evening of live music. 

“Woody’s best songs” and writings 

May 5, 2012 in Nashua New Hampshire 

Peppertown 

Join HDSA for an evening of live Beatles music with 

Peppertown, the best Beatles cover band around! 

Saturday evening, May 12, 2012 at the Chelmsford 

Massachusetts High School Auditorium. 

New Orleans Gala 

Can’t make it to New Orleans for the Mardi Gras next year? 

That is ok! Join HDSA for a New Orleans Gala to benefit 

HDSA Centers of Excellence. 

Live New Orleans Jazz, delicious Cajun menu, dancing, live 

and silent auctions. We guarantee you an evening you will 

never forget! Friday Evening, May 19, 2011 from 7pm to 

11:00 pm at the Newton Marriott in Newton, Massachusetts. 

Tickets for the New Orleans Gala: 

Early Bird price $80.00 per person- Purchase tickets through April 30, 2012. 

Regular $100.00 per person- Purchase tickets May 1, through May 10, 2012. 

MORE DETAILS COMING SOON!!! 

HDSA New England News Fall 2011 3

Annual New England Education Day 

4 HDSA New England News Fall 2011 

Saturday, November 5, 2011- 8:30 AM – 4:00 PM 

Marriott Providence Downtown 

1 Orms Street 

Providence, RI 02904 

Annual Education Day Program for Saturday November 5, 2011 from 8:30 a.m. to 4 p.m. 

8:30 – 9:00 Registration and Continental Breakfast 

9:00 - 9:15 Welcome/Opening Comments HDSA New England Regional Director Virginia Goolkasian 

Lundbeck Pharmaceuticals Representative Janine Gustafson 

9:15 - 10:15 New Therapeutics for 

Huntington’s Disease: Silencing 

the Mutant Gene 

10:15 - 11:15 Towards Early Disease 

Intervention: Attacking the CAG 

Repeat Mutation 

11:15 - 11:30 Break 

11:30 - 12:30 Depression, Anxiety & Anger 

in Huntington’s Disease: 

Understanding the Ways Out 

12:30 - 1:30 Lunch 

Dr. Neil Aronin—Professor of Medicine, Chief of Endocrinology 

& Metabolism, and Co-Director of the Neurotherapeutics 

Institute at UMASS Medical School 

Vanessa (Vickie) Wheeler, Ph.D.—Assistant Professor of 

Neurology at Harvard Medical School & Assistant in Genetics 

(Neurology) at Massachusetts General Hospital 

Dr Wally Deckel—former Co-Director of HD Clinic at the 

University of Connecticut. Currently sees HD patients/family 

members in Northborough, MA. 

1:30 - 2:30 A: Financial Planning: Paul C. Haun—Financial Representative, Wellesley Group of 

the Northwestern Mutual Financial Network 

2:30 - 2:45 

B: End of Life Issues & 

Advance Directives. The Role of 

Hospice/Palliative Care 

Dr. Matthew Russell—Attending Physician in Geriatrics at 

Boston Medical Center & Assistant Professor of Medicine in 

Geriatrics at B.U. School of Medicine. 

Sarah Miller—LICSW, Director of HD Program at Laurel Lakes 

Nursing/Rehabilitation Center in Lee, MA & Affiliate Member. 

C: Ask the Doc Dr. Samuel Frank—Associate Professor of Neurology and 

Co-Director of Neurology Resident Education at B.U. 

2:45 - 3:45 D: HD 101 Cheryl Sullivan Staveley—RN & Family Caregiver 

E: Clinical Trials: What Are 

They? Who Can Participate? 

Break 

Dr. H. Diana Rosas—Neurologist/Researcher at Massachusetts 

General Hospital 

F: Advocacy in 2011 Shannon McLoud—R.I. Affiliate Advocacy Leader 

3:45 -4:00 Closing Comments, Evaluation Submissions, & Goodbyes 

Pre-Conference Reception on Friday, November 4, 2011 from 7:00 pm to11:00 p.m. 

Kindred Healthcare is kindly co-sponsoring a free pre-conference reception for all conferees recognizing those whose 

contributions will bring us to a cure. Join us in the Marquis Room for cheese, crackers, cash bar and salutes to our 

honorees. RSVP by checking the box on the Registration Form. 

Thank you to our 

sponsor.

Annual New England Education Day 

REGISTRATION INFORMATION 

**Early Bird Special ** $20.00/person 

Mail: Postmark by 10/20//2011- Online: Submit by 10/23/2011 

Regular registration: $25.00/person 

Mail: Postmark by 10/26/2011-Online: Submit by 10/31/2011 

Sorry, no registrations accepted at door 

Registration includes: Friday evening reception, continental breakfast, buffet lunch, and free parking at hotel. 

To register online: www.hdsa.org/neday 

To register by mail: Complete and mail registration form to: 

HDSA New England Regional Office 

6 Boston Road, Suite 203A, Chelmsford, MA 01824 

Mail-In Registration Form 

Name________________________________________________________________________________ 

Address______________________________________________________________________________ 

_____________________________________________________________________________________ 

Phone ___________________________________Email ______________________________________ 

Additional name(s): (Use separate sheet if needed.) ___________________________________________ 

________________________________________ ___________________________________________ 

I/we will __ will not __attend the Friday reception 

Special meal preparations? ____ Please describe: ____________________________________________ 

Method of Payment: 

Check made out to HDSA: ____ 

Bill my: ___American Express ___Visa ___ Master Card ___ Discover 

CC#: ____________________________________ Expiration: ______________ CVV #______________ 

_____________________________________________________________________________________ 

Print name on above line as it appears on card 

_____________________________________________________________________________________ 

Cardholder’s Signature 

Directions: www.marriottprovidence.com 

Accommodations: To reserve a room at the Providence Marriott for Friday and/or Saturday night, call 

(401) 272-2400 by October 6, 2011 and ask for the Huntington’s Disease Society rate ($139.00 per night). 

After deadline date, reservations accepted on a space and rate available basis. 

For more information, contact: Virginia Goolkasian 

Phone: (888) 554-8102 Ex:13 FAX: (978) 256-0812 Email: vgoolkasian@hdsa.org 


Maher Family 6th Annual Benefit Dinner 

The Maher Family held their 6 th Annual Benefit dinner this year, raising $5,655 for Huntington’s Disease Research. In 

the Spring of 2010, Melinda was recognized for her community service by CABOT Creamery and two of their 

representatives attended the dinner and provided a cheese tasting. It was a great addition to the event and it really got 

people up and mingling. 

There were many companies who made generous contributions and individuals 

who dedicated hours of their time. The Maher Family will continue to host this 

event until there is a cure for Huntington’s Disease. To find out more about the 

Maher Family’s efforts please visit their website www.curehd2006.com. 

Pictured Right: Proud Melinda Maher pulls off another successful event in memory of her father. 

Pictured Left : Cheese tasting provided by CABOT Creamery 

New Hampshire Raffle Day 

Charlene Weed, the NH affiliate chair and Darlene Colwell-Ellis worked hard to pull off another fun and successful 

annual raffle day on April 26, 2011. The event was hosted by the Riverside Resthome and there were more than 

enough goodies for those who came including pizza, Doug’s Hoagies, soda, water, chips, baked goods, home made 

bread, fudge, pies, and cakes. Eighty items were raffled off and everyone had a great time. The event raised $2500. 

Memorials 

HDSA extends its deepest sympathies to the families who have recently lost a loved one. 

We gratefully acknowledge the memorial contributions made to honor: 

Gerald Reilly Charles Devine, Jr. Richard Gold 

Korey Kucker Norman Desrosiers Kathryn Reilly 

Donald Reilly Eleanor Ann Schuler Kenneth Costic 

Bertha Abbott Michael John McCormick Florence Savage 

Leonard Fountaine 

Louise DeGregory 

THANK YOU 


Madison Avenue Gala: an evening to remember. 

Continued from page 1. 

volunteers who arrived early and helped to set up, register guests, manage auction items, and 

much more to ensure the evening ran smoothly: Stacie Allen, Nicole Golding, Frank Heslin, Cory 

Lathbury, Kathy Livingston, Mary MacLeod, Elissa and Jenna Montilio, Mark Muzi, Andre and Nina 

Radzim, Shannon Stott, Cory Tang, and Alex Will. 

We are forever grateful to the saints that transformed the evening, namely: Cathy Allen of Ann’s 

Window Shoppe for the floral arrangements, Linda Druker for designing all the print materials, 

Jessica Hallett of Jess Hallett Photography, Rebecca McGrotty of Signature Impressions for 

invitations and programs, as well as George and Christine Montilio of Montilio’s Bakery for providing 

baked goods to our guests. 

Thank you to our Sponsors 

Madison Ave. 

A.A. Will 

American Environmental Group LTD. 

B&M Excavating Companies 

5th Ave. 

Lundbeck 

Park Ave. 

Massachusetts General Hospital Neurology 

Novartis 

NStar 

S&F Concrete Contractors 

Central Ave. 

Aon 

Boston Sand and Gravel 

Liddell Brothers, Inc. 

Milton CAT 

Peabody Properties 

S.M. Lorusso & Sons, Inc. 

Travaglini, Eisenberg, Kiley L.L.C 


Despite the threatening clouds and pesky mosquitoes, 250 people came to the Ashley Reservoir in 

Holyoke, MA to run or walk for 5 km in the first Hunting for a Cure event on Memorial Day weekend. 

The soon-to-be-annual event is the creation of Jennifer Gilburg whose family is afflicted by HD. She 

was well supported by a planning committee of several family members and friends, as well as the 

Massachusetts HDSA Chapter to make this first event an unequivocal success. After the 5K, 

participants stuck around for a great buffet provided by Hamel’s Catering, a raffle and live music 

performed by New Orleans singer/songwriter Brian Perry. 

Thanks to sponsors, (Supporter Level, $500) 

O'Donald Law Offices, Ladies Landscaping, 

Alternative Recycling Services, The Boston 

Company, and (Champion Level, $1000) 

Holyoke Credit Union. Along with numerous 

other donations of money and raffle prizes, the 

event raised over $11,000 for HDSA! 

Jennifer plans on “running” this event again on 

June 23, 2012 at the same great location. 

Maybe next year someone can beat her in the 

race (she took first place in her age group)! 

She is looking forward to increasing 

participation and making the event even more 

exciting and beneficial for the HD community. 

Please join us or support the event next year! 

Hunting for a Cure 

Advocacy Efforts in Massachusetts 

On July 18, 2011 HDSA advocates Brett Thomas and Laura Hillard, National HDSA board member, Dr. Samuel 

Frank, Jane Kogan, HDSA national member, Karen Baker, NE Regional social worker and Virginia Goolkasian, NE 

Regional director met with US Senator Scott Brown on July 18th to discuss the Huntington’s Disease Parity Act 

(S. 648). The Senator listened to the facts and HD family member stories and agreed to discuss the legislation with 

his staff in Washington. 


Rhode Island’s First HD Awareness Month 

On Tuesday, May 17, the Rhode Island State House 

of Representatives invited the Rhode Island Affiliate 

to sit on the House floor to witness the reading of 

Resolution H-6080 which proclaimed The Month of 

May, 2011 to be Huntington’s Disease Awareness 

Month in the state of Rhode Island. This bill was 

passed unanimously on April 27. The timing of the 

bill was apropos as it marked the twentieth 

anniversary of proclamation 6295, marking May of 

1991 National Huntington’s Disease Awareness 

Month. The Rhode Island Bill was introduced by 

Representative Patricia L. Morgan, who is already 

planning on repeating the same action for May of 

2012. Certain members of the Affiliate were 

recognized by the House, namely Cameron Brown 

and Lynn Doyle, Affiliate Chair. The entire Affiliate 

received a standing ovation. Pamphlets and HD 

Awareness bracelets were distributed to House 

members.

Rhode Island Affiliate 4 th Annual Walk 

On Saturday, June 4, 2011, the Rhode Island Affiliate held their 4 th Annual Walk at Colt State Park in Bristol. The 

Affiliate was proud to have Representative Patricia Morgan and Lt. Governor, Elizabeth Roberts on hand for the 

ribbon cutting ceremony. The affiliate presented awards of recognition to affiliate members Shannon McLoud for her 

efforts to promote HD awareness in Rhode Island and Bill Shalvey & Family for their dedication to all the Rhode Island 

Events. 

This year’s walk raised nearly $22,000 in pledges and proceeds. Shaw’s Supermarket supplied bottles of water for all 

our thirsty walkers, Phil Pitzer kindly donated his morning to DJ the event, Blount Fine Foods donated delicious clam 

chowder, Miz Fibz Deli & Café provided coffee, and the Shalvey family as always grilled up terrific hot dogs. 

Dr. Rosas & Dr. Hersch from the HD Massachusetts Center of Excellence along with their two lovely daughters 

Micaela and Giovi were hard at work selling lemonade. We sincerely thank all our sponsors: Silver Sponsors - 

Piccerelli Gilstein & Company, UNFI, and Ann Arbor Annuity Exchange; Bronze Sponsors – Cornerstone Restoration, 

Inc., John Andrade Insurance Agency, Inc., WD & Associates, Inc., and McVay Physical Therapy. Once again the 

support from all of our volunteers was immeasurable! We would also like to thank Lundbeck for all the support they 

provide to HDSA. 

Right: RI Affiliate Walk at Colt State 

Park in Bristol, Rhode Island. 

From left: Lynn Doyle, 

Virginia Goolkasian, Shannon McLoud, 

RI Representative Patricia Morgan and 

RI Lt. Governor Elizabeth Roberts. 

Walk Wrap Events 

Songs of Hope & Yard Sale 

3heARTS Productions held a wrap around event for this year’s walk in the form of a Cabaret, the theme being hope! 

The one day event on May 28, 2011 featured a matinee and evening performance, and interestingly enough the 

Cabaret was held in Hope, Rhode Island. The show also featured a presentation entitled “Faces of HD” where people 

throughout the country hallowed family pictures to be presented interspersed with HD facts. There was also an 

education table to further promote awareness. They raised $640 in ticket sales! 3heARTS will be continuing this 

event annually as RI Affiliate member, Shannon McLoud is one of the founding members. 

Another wrap event was held on Saturday, May 21 - Diane LaCharite organized a yard sale that raised $1,088. She 

spent months collecting and tirelessly organizing sale items from family, friends, and neighbors. Lisa Silvia held an “In 

Your Genes Day” at OPTUM Insight located in Providence, Rhode Island that raised $155. In addition, Shannon 

McLoud also organized an “In Your Genes Day” at Pumpkin Patch Early Learning Center located in Cranston, Rhode 

Island that raised $90 



Planning Ahead – 10 Tips for the Long Run. 

Living with the daily challenges of HD can make it difficult to plan for the future. Here are some tips which may help 

you now and make future events easier to manage. 

Financial and Insurance Benefits: 

1. State Health Insurance (called Medicaid in many states) may be available to disabled individuals who meet certain 

income and resource restrictions. Contact your local Health and Human Services agency to identify benefits and 

eligibility in your area. 

2. Disability Insurance: State Disability and Social Security Disability Insurance (SSDI) may offer persons with 

disabilities financial assistance when they are no longer able to work due to their medical condition. Before applying, 

work with your health care team to gather medical documentation about how HD has affected the ability to work and 

to perform independent self-care. 

3. Long-Term Care (LTC) Insurance. LTC policies can help cover future caregiving needs, such as: in home care, 

assisted living placement, nursing home care, adult day health care and respite care. With exception of some State 

Medicaid Insurance Programs, LTC needs are not covered by ordinary medical insurance policies. LTC Insurance is 

often offered by employers and sometimes can cover parents. Coverage for persons diagnosed with HD is not 

guaranteed under law. 

Community Resources and Assistance: 

4. Respite and Assistance with Care: Over time, caregivers need help to prevent stress and burnout. Your local 

health department or social services office may know of community and respite resources, such as: Adult Day Health 

Care Programs, In-Home Assistance, and Community/Senior Centers. There may also be friends and family who can 

be organized to assist with caregiving and household responsibilities. 

5. Long Term Placement: There may come a time when it is no longer possible to provide optimal care for the person 

with HD at home. Consider looking into local long term care options, such as nursing homes, before placement is 

needed. Visiting the facility now will help you make an informed decision when the need for long term care arises. 

Advance Care Planning: 

Talking about Quality of Life and End of Life issues can be difficult, but knowing what a loved one wants is the best 

way of honoring deeply held wishes and beliefs. 

6. Quality of Life discussions may include: what in life is important to you, how you want to live your life, your spiritual/ 

religious preferences, and how you want to be cared for. 

7. Medical and/or End of Life Wishes should include preferences about: pain management; artificial nutrition and 

hydration; intubation, resuscitation, antibiotics, dialysis, medication, surgery, and which treatments are NOT wanted. 

8. Durable Power of Attorney/Health Care Agent/Health Care Proxy. It is important for the person with HD to legally 

designate someone trustworthy to make critical medical decisions if he or she is unable to do so. 

9. Brain, Body or Organ Donation If there is an interest in donation, options should be researched and pre-registration 

completed in advance. Donation wishes are challenging to organize after death. 

10. Documentation of Your Wishes 

This is probably the single most important tip of all. There are legal documents that will ensure that medical, financial 

and end of life preferences are followed: Living Wills; Advance Health Care Directives, 5 Wishes, Physicians Order for 

Life Sustaining Treatment (POLST), and Do Not Resuscitate (DNR)/Do Not Intubate (DNI) forms. For the specific

documentation available in your state please contact your local HDSA Social Worker. 

BONUS TIP: Get Involved/Take Action! Participation in HD specific events/activities (HD support groups, 

fundraising events, research opportunities, etc.) can assist with coping and establishing with a community of people 

that understand what you are feeling and the challenges you are experiencing. 

For more information about HD and community resources available in your area please visit www.hdsa.org or contact 

your local HDSA Center of Excellence or HDSA Chapter Social Worker. 

Lisa Kjer, MSW 

HDSA Center of Excellence 

UC Davis Medical Center 

Planning Ahead – 10 Tips for the Long Run. 

Informational Session with HDSA Social Worker 

JOIN US 

Bring your questions, issues and concerns on resources, insurance, and other topics related to HD. 

Tuesday, November 1, 2011 

7:00 pm 

Informational Session with 

Karen Baker, HDSA Social Worker 

White Hall Estates Assisted Living 

790 Falmouth Road 

Hyannis, MA 

Please RSVP to Karen Baker, 508-446-7705 or kbaker@hdsa.org 

Pleasant Point Education Day 

On July 15, the Maine Affiliate of HDSA held an Education Day for the Passamaquoddy Tribe at the Pleasant Point 

Reservation in Perry, Maine. The event was made possible thanks to a grant from HDSA and Lundbeck 

Pharmaceuticals with organizational support from both. The 50 attendees were made up of doctors and other medical 

professionals, caregivers, family members and people with Huntington's Disease. 

There was an impressive line up of speakers including Dr. William Stamey- movement disorder specialist, Cheryl 

Staveley - HD Ambassador, Katie Moser, - OT and HD Advocate, Jackie Cassiday - speech therapist, Greg Patterson 

- mental health professional, Dr. Robert Beekman, - Center for Human Genetics and pediatrician, and Nancy 

Patterson - HDSA Maine Affiliate Chair.The professionals provided the group with a better understanding of the 

disease that plagues them, tools to help them cope, encouragement to face the inevitable and hope that one day 

researchers will discover the way out of these dark times. From treatments and therapies, to diet and swallowing, to 

clinical trials and research, to genetic testing and family planning,to inspirationa and acceptance, the conference left 

the Passamaquoddy people with resources and information to help them take the next steps on their journey with 

Huntington's Disease. 

The Tribal Chief and the Assistant Health Director did the welcome and the keynote, respectively. There was also an 

opening prayer and a closing with the honor song performed by the Little Eagles Drum Group for a Celebration of 

Hope. 


Advance Care Planning, Hospice and Palliative Care 

This article is the first in a series regarding Advance Care Planning and Hospice and Palliative Care. These subjects 

are such an important aspect of our lives and yet at the same time very difficult to discuss and often wrought with 

emotion and difficult conversations. To help bring more clarity and understanding to these topics we will devote the 

next two newsletters to providing relevant information about them in order to help educate our readers. The first 

article describes what advance care planning is, the importance of having it in place and where to find advance care 

planning tools to help you through the process. The second article will cover the topic of hospice and palliative care 

and provide information to help you better understand end of life care as well as to dispel many myths surrounding 

this often emotionally charged topic. We hope this information will help to inform you of your options and choices so 

that together, you and your loved ones can make the most informed decisions regarding your personal situation as 

you plan for the future. 

What is Advance Care Planning? 

Advance care planning is making decisions about the care you would want to receive if you happen to become unable 

to speak for yourself. These are your decisions to make, regardless of what you choose for your care, and the 

decisions are based on your personal values, preferences, and discussions with your loved ones. If you are in an 

accident or have an illness that leaves you unable to talk about your wishes, who will speak for you? You can tell your 

family, friends and healthcare providers what your wishes and personal beliefs are about continuing or withdrawing 

medical treatments at the end of life. If you do not let others know your preferences and the medical team needs to 

make decisions for you, they must provide any and all life-sustaining measures. 

Advance Care planning includes: 

• Getting information on the types of life-sustaining treatments that are available. 

• Deciding what types of treatment you would or would not want, should you be diagnosed with a 

life-limiting illness. 

• Sharing your personal values with your loved ones. 

• Writing down what types of treatments you would or would not want if you are unable to speak for 

yourself. 

Communicating Your End-Of- Life Wishes 

Decisions about end-of-life care are deeply personal, and are based on your values and beliefs. Because it is 

impossible to foresee every type of circumstance or illness, it is essential to think about what is important to you. 

Conversations that focus on your wishes and beliefs will relieve loved ones and healthcare providers of the need to 

guess what you would want. Advance care planning typically involves a written document that assists in ensuring that 

your care is customized to reflect your personal preferences and health needs as well as meet your social, cultural, 

and religious preferences. It covers issues such as whether you want your heart restarted, if you want a breathing 

tube, how you would like to manage pain, as well as documenting your opinions about hypothetical situations. These 

opinions can help clarify and predict the options you would have chosen if you were unable to make your own 

decisions. 

Patients who talked with their families or physicians about their preferences for end-of-life care: 

• Had less fear and anxiety. 

• Felt they had more ability to influence and direct their medical care. 

• Believed that their physicians had a better understanding of their wishes. 

• Indicated a greater understanding and comfort level than they had before the discussion. 

Frequently, however, such discussions are not held. If a patient becomes incapacitated due to illness, the patient's 

family and physician must make decisions based on what they think the patient would want. 

Types of Advance Directives 

Healthcare Proxy 

A healthcare proxy is a document allowing you to designate an individual, known as a healthcare agent, to make 

healthcare decisions on your behalf in the event that you are unable to make or communicate your own decisions. 

The agent may be a trusted family member, friend, attorney, or other designated person of your choice. It is also a 


Advance Care Planning, Hospice and Palliative Care 

good idea to identify an alternate agent to serve if the original appointee is unavailable. The role of this agent is to 

make decisions based on what he or she believes you would want or, if this is unknown, to decide based on your 

medical best interest. This agent may make healthcare decisions in any situation where you are unable to make or 

communicate your wishes, not just in end-of-life situations. You may also place specific limitations on the agent's 

decision-making power. Before signing a healthcare proxy, it is important to talk to your agent to make sure he or she 

is willing to take on this important role. Choosing an agent is an important decision. Select someone who knows you 

and is comfortable honoring your specific wishes. When you choose an agent there are some exclusions you need to 

be aware of. The agent cannot be under the age of 18 or be, “an operator, administrator, or employee of a hospital, 

nursing home, rest home, etc… where the principal is presently a patient." Discuss your wishes openly and in detail so 

that your agent can represent you well. Having this conversation is important so that your agent will know what you 

would want. 

Living Will 

A living will is a written statement of your wishes for medical treatment and end-of-life care in the event that you are 

unable to make healthcare decisions or communicate them directly. It may include provisions instructing physicians of 

the circumstances in which you wish treatment to be withheld or withdrawn, including situations in which you do not 

want drastic life-saving steps taken. 

General Points to Consider 

A healthcare proxy and a living will work together to form a complete set of instructions and authority for end-of-life 

care. After signing these forms, it is important to discuss these documents with and provide copies of them to your 

designated agent(s), family members, physician, and clergy. It is recommended that a copy should be given to your 

primary care physician for placement in your permanent medical records. The original should be kept in a safe but 

easily accessible place. It is not recommended that you keep your healthcare proxy in a safety deposit box. 

In addition, you should give a copy of these documents to any healthcare facility where you are admitted. Hospitals, 

nursing homes, and other healthcare facilities that accept Medicaid or Medicare are required to inform patients of their 

rights to have advance directives. They must also keep the directives in the medical record and let patients know of 

any policies that would keep the facility from fully complying with the directive. Be aware that if you should complete a 

new healthcare proxy form, the proxy signed most recently will replace any proxy that you signed earlier. 

You may revoke your healthcare proxy or living will at any time while you can still make decisions for yourself and it 

will be automatically revoked if you become divorced or legally separated and your spouse was named as your agent. 

However, it does not have to be replaced if used or in the event that you later regain the capacity to make your own 

decisions. You should review your healthcare proxy and living will at least yearly and discuss them with your agent to 

make sure they still accurately reflect your wishes. 

Advance Directive Forms 

Healthcare Proxy Form 

There is no specific healthcare proxy form required in some states, but laws differ per state. However, easy-to-use 

sample forms that comply with state laws can be downloaded from the National Hospice and Palliative Care 

Organization at: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3278. 

Other Forms 

Five Wishes 

A form developed by Aging with Dignity which combines a healthcare proxy and many parts of a typical living will. This 

form is available at www.agingwithdignity.org 

Personal Wishes Statement 

A form developed for documenting personal wishes. This form is available at www.betterending.org 

Note: Although it is not necessary for an attorney or a notary to be present when you 

execute your healthcare proxy, you may want to check with an attorney if you are not 

certain whether a particularform is recognized under your state law. Each state has 

specific laws governing advance directives. If you regularly spend time in another 

state, you may wish to consider completing the documents that are legally 

recognized in that state. 


Resources 

Support Groups 

There are 12 support groups in the New England area. Please call New England Regional 

Social Worker Karen Baker at 508-446-7705 for support group locations and times. 

New England Center of Excellence HD Clinics 

Services at Massachusetts General Hospital 

The MGH clinic provides neurological appointments, physical therapy, speech pathology, 

genetic counseling & testing, social services, and research studies. 

Clinic Hours: First and third Wednesday of each month 1:00 PM– 5:00 PM - Appointments 

necessary. 

For neurological, physical therapy and speech pathology appointments contact Joceneia 

Timas: 617-724-9234. 

For genetic counseling, genetic testing or social services contact Judy Sinsheimer: 

617-726-2603 

Tewksbury Hospital Clinic 

The clinic provides comprehensive physical evaluation and recommendation about how to alleviate 

problems. The interdisciplinary team includes a physical therapist, occupational therapist, 

speech therapist, nutritionist, neurologist, and nurse practitioner. Social services are 

also available. Patients will spend approximately 2 hours for a comprehensive evaluation. 

Clinic Hours: Every second Tuesday of the month 8:30 AM-12:00 noon. Appointments necessary. 

Contact Kathy LaVargna: 978-851-7321 at extension 2374. 

Boston University Medical Center 

Dr. Samuel Frank, Dr. Marie Saint-Hilaire, Melissa Diggin GNP 

720 Harrison Ave. Suite 707, Boston, MA 02118 or 1221 Main St., South Weymouth, MA. 

For appointments: Boston: 617-638-7704 Weymouth: 781-331-9944 

Connecticut 

University of Connecticut 

Health Center Huntington’s Disease Program 

263 Farmington Avenue Dowling North Second Floor, Farmington, CT 06030-6204 

Contact: 860-679-4441 

Our websites include a list of neurologists, nursing homes, and other sources of support. 

Our social worker can also provide this information if you cannot access the internet , have additional 

questions or need support. 

New England Regional Social Worker Karen Baker 508-446-7705 or email kbaker@hdsa.org 

The national office of HDSA also has an extensive list of educational materials and additional 

resources. Those can be found at www.hdsa.org 


Contact Us 

New England Regional Office-HDSA 

6 Boston Road, Suite 203A 

Chelmsford MA 01824 

Telephone: 978-256-0811 

Toll Free: 888-554-8102 

Fax: 978-256-0812 

New England Regional Director Virginia Goolkasian x 13 

vgoolkasian@hdsa.org 

Chapter and Affiliate Leadership Contacts and New Websites 

Our Massachusetts Chapter and New England/Greater Albany Affiliates now have their own 

websites. The New England website which had been your source of information for the entire 

region has been retired. Please visit your local website for HDSA news specific to your area. 

Massachusetts Chapter President Kathy Hackett Kathleen.hackett3@verizon.net 

www.hdsa.org/ma 

Rhode Island Affiliate Lynn Doyle lddoyle@cox.net 

www.hdsa.org/ri 

Maine Affiliate Nancy Patterson pattersonncy68@gmail.com 

www.hdsa.org/me 

New Hampshire Affiliate Charlene Weed weedswd@comcast.net 

www.hdsa.org/nh 

Connecticut Affiliate Susan McGann smgann@hdsa-ct.org 

www.hdsa.org/ct 

Greater Albany NY/Western MA/Bennington VT Affiliate Marcella Junco mjunco@kpmg.com 

www.hdsa.org/albnywestma 


6 Boston Road, Suite 203A 

Chelmsford, MA 01824 

Do you want to find out 

more about joining a chapter or affiliate for the 

Huntington’s Disease Society of America 

or simply helping out on one of our 

event committees? 

Please contact Virginia Goolkasian at 

vgoolkasian@hdsa.org

New England News Fall 2011 - Huntington's Disease Society of ...

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