HDSA Goals - Mission in Action

Our new fiscal year is already underway and I want to take a few moments to thank you all for the hard work that you’ve put in during the 2010-2011 fiscal year, and for the dedication and dreams that you have for the Society in 2011-2012. Each and every event and activity that you host is vital to the achievement of the Huntington’s Disease Society of America’s unwavering commitment to improving the lives of everyone affected by HD.

It has been an exceptional year in the Society’s history. We welcomed 2 chapters and 6 affiliates across the nation, broadening our reach to families who need us. In English and in Spanish we brought new resources to providers and caregivers, and our voice on Capitol Hill has never been stronger. Every chapter and affiliate now has their own website through HDSA.org which they can manage and personalize to showcase their local presence and vital financial tools like the Accounting Manual (which is now available) and a calendar-based fiscal year beginning in 2012 will help with planning.

As many of you know, our annual Program of Work is based on targets or goals that we work to attain. We began this past fiscal year with 57 specific targets spanning all seven of our organizational planning areas. These targets represented the growth of our community-service programs and advocacy efforts, greater awareness of our cause and an expansion of our development efforts that fund our work. Achievement of these targets is the backbone of our impact.

I’m pleased to share that during this year, 56% of our targets were achieved and another 37% are well on their way to completion. For the few that could not be accomplished, outside factors were at play, and we’ve developed our 2012 plan to take into account these learnings.

Here is just a snapshot of some highlights:

  • Published the new edition of The Physician’s Guide for the Management & Treatment of HD;

  • Coordinated speakers at 99 support group meetings and launched the new We Are HDSA newsletter specifically to bring new resources to our 160+ support groups around the nation;

   • Established a new working group to evaluate Long Term Care for HD;

   • Reintroduced the U.S. HD Parity Act in the House of Representatives and had it introduced for the first time in the U.S. Senate;

  •  Hosted a meeting for all the Coalition for the Cure investigators and continued to support meetings of the investigator teams; Held more than 75 Team Hope walks in 20 new communities; and Paid off more than $2 million is past due grants to HDSA Coalition for the Cure investigators and HDSA Centers of Excellence.

A significant task for this past year which I spoke about at length at the Annual Convention is the continued work of the Strategic Planning Task Force. The Task Force, which first met in 2010, is on track to have a complete draft of the Plan ready for community feedback in early 2012. This will be the first strategic plan for the Society in decades, and it will provide a five year roadmap for HDSA’s care and research initiatives.

It bears repeating that the Society remains very committed to research. As I mentioned above and have discussed before, our financial stability was dependent upon our ability to pay the debt of old unpaid grants to our Coalition for the Cure and Centers of Excellence. In 2010-2011, we made huge strides in that area and I’m excited to share that our Strategic Plan will include plans for a new round of research funding.

On the pages that follow you’ll find a summary of the 61 new targets that we will work to achieve before December 31, 2012. They build upon our previous successes and position us for the implementation of our new Strategic Plan, always focused on ensuring expert care and support for everyone touched by HD and committed to bringing an end to the pain and suffering it causes.

It will be a busy year and I encourage you to monitor our collective progress through the monthly leadership updates that I send out to our Chapter Presidents and Affiliate Chairpersons to share with all of our volunteer leaders. And as always, we welcome your feedback. Please don’t hesitate to reach out to me directly at lvetter@hdsa.org at anytime with your questions and thoughts.

As I wrap up this letter I want to share with you something that I’m sure you’re faced with as well. At least once a week, I’m asked when all of the science in HD will finally lead to a cure. I don’t make false promises, hypothesize a date or scope out a timeline, but I will tell you this…

In every conversation that I have with researchers around the globe, the optimism is palpable. The momentum of the sheer volume of research being conducted has an energy that tells me that somewhere in the halls of medicine being studied today is something that can slow, if not stop, HD. I don’t know who will ultimately have the breakthrough or when it will reach our loved ones and friends, but it’s out there -- and we must not stop until it is found.

We must continue to encourage participation in clinical and observational studies, like the new ENROLL-HD trial which will launch in 2012, and strive to show every pharmaceutical company that the HD community is passionate and supportive of their efforts to find a new treatment. Our families depend on it.

Thank you again for everything you give and the hope you bring. I look forward to our continued partnership, and I wish you a very successful fiscal year.



Louise Vetter

Chief Executive Officer


2011-2012 Program of Work Goals


1)      Build an HD Community-service organization.

  • Increase and expand resources for HD community.
  •  Continue to expand resources on national referral database using existing programs and targeted searches.
  •  Host HDSA Annual Convention as a premier educational program with social networking and support thus providing the HD community with a unique experience.
  •  Expand Ask the Social Worker, a bi-monthly online column that provides the HD community with a new resource for problem-solving.
  •  Maintain Lotsa Helping Hands online resource and toolkit for caregivers.
  •  Launch dedicated helpline to Community Services Manager
  •  Conduct support group survey to determine who is affiliated with HDSA, type of stakeholder in each group, minimum and maximum attendance, etc
  •  Create educational programming for healthcare professionals, legal  entities and HD community that will promote greater engagement and knowledge about HD.
  •  Conduct new social worker training: HDSA expects to hire two to three new social workers in 2012.
  • Expand and update Support Group leader training/mentoring program, picking up where the program ended in 2011, the plan calls for testing  the PowerPoint tool developed in Q3 of 2011, revising the manual, You Are Not Alone, and developing a new manual for the trainer.
  • Provide Professional Training for HDSA-funded social workers with an opportunity to continue education about HD. Increase outreach by inviting SW from HSG facilities.
  • Launch Regional Social Worker Training program.
  • Increase impact of Field Based Education Program by providing new programming for field based educational events. Goal in 2012 is to bring a Clinical Trials Diplomat to all events that hosted CT workshop in 2011 and to increase number of events from 24 to 29. Secondary goal is to create sample ½ day and full day programs as well as a new nutrition workshop that would roll out in June 2012.
  • Law Enforcement/Legal Advocacy Tool Kit: pilot parts of tool kit that have been completed including do/don’t for caregiver.
  •  Extend audience reach of National Convention Workshops and Presentations building upon HD community experience with webinars. 


2)      Become the premier communicator of HD information. Provide HD information to stakeholders through national publications, webinars and other communications and teaching tools.

  • The Marker: continue to produce and print a reduced amount. Continue to send bulk copies to Centers of Excellence, HDSA SW and RDD.
  •   Caregiver’s Corner: continue to offer on a monthly basis or alternating with a new lunch and learn series. Archive all webinars. Offered 10 webinars in last fiscal year
  •  Assist expansion of NYA participants and support for 12-18 year olds.
  •  Lunch and Learn: a new alternating web series that broadens the range of topics offered to stakeholders. Not focused primarily on caregivers.
  •  Family Guide Series: update last title in series (Speech/Swallowing).
  •  Develop two new pamphlets on Talking to Your Children About HD.
  • We Are HDSA: continue to publish monthly as a two or four pager.  Continue to encourage electronic version.
  • Update/revise HDSA.org to create more intuitive and family focused site. 
  • Increase media awareness coverage of HDSA and HDSA programs by 10 percent.
  •  Support expansion of Chapter/Affiliate Websites.
  •  Expand Library of templates and branding materials for Field media and marketing support.
  • Develop archive of Photo/Film/Video/Audio/other materials.


3)      Remove barriers to quality care.

  • Expand physician education through revision of national handbook on behavior, web based CME course, development of best practices and recommendations for long term care, and introduce early intervention in nutrition.
  • Increase physician education and family education on early intervention strategies, such as nutrition, to ensure quality of life and family interaction throughout course of HD.
  • Retrospective of Decade of Care through HDSA Center of Excellence program.
  •  Increase grassroots engagement utilizing Huntington’s Disease Parity Act and other issues/strategies.
  •  Congressional Briefing
  • Video contest for Advocacy Awareness month
  • Hold three mini advocacy days in Nevada, Florida and Indianapolis to engage advocates prior to HDSA convention in Las Vegas (12) and Jacksonville (13).
  • National District Meeting Month
  • Advocacy “meet and greet” at HDSA convention.
  •  Candidate Questionnaire and town hall meetings
  •  Healthcare reform


4)      Support HD research & communicate its impact.

  • Launch new research grant cycle for funding in 2013.
  • Engage stakeholders in HD scientific advances through national publication and educational initiatives.
  • Publish Toward a Cure to provide an update on what is going on in research.
  • Update Clinical Trials Education presentation to include ENROLL-HD and to offer a Diplomat at events that have offered clinical trials in the past.
  • Build on the HDSA Diplomat program by engaging more Diplomats and confirming more activities for them. 
  • Update Speaker’s Bureau. Enhance community education and access to information re: research, clinical trials, new developments in HD and other related-disease science through active partnerships. Increase enrollment in HDTrials.org by 10% and continue to build utilization of site by trial sponsors.


5)      Grow volunteer involvement.

  • Expand Development Committee’s involvement in fund raising.  
  • Identify nationwide 2 new affiliates and 1 new chapter.
  • Continue to expand communication, training and development opportunities for Field Leadership and Field Staff.
  •  Expand use of donor database to capture donor information and improve cultivation of prospects. Hold Board Retreat.

6)      Increase revenue to grow organizational capacity.

  • Raise $960K in Major Gifts.
  • Raise $332K in Family Funds.
  • Raise $293K through Tributes/Memorials.
  • Raise $290K through Direct Mail/Direct Response program.
  • Raise $291K through sweeps campaigns (BMW, winter and summer sweepstakes.) Raise $120K to underwrite 2012 Convention.
  • Raise $770,500 in corporate support for educational programs and general operating support. Raise $62,500 in Foundations & Non-Corporate Grants. 
  • Receive $450K in bequest income (based on 8 year average).
  • Capitalize on Woody Guthrie’s 100th Anniversary for cultivation events and increased brand awareness.
  • Raise $50K through web store and related third party campaigns, including Amaryllis.
  • Secure $100,000 in national corporate sponsorship for the Team Hope Program.
  • Achieve 5% growth over prior year for the Team Hope Program.
  • Through new market expansion activities, generate $200,000 in additional revenue throughout the 9 regions. Generate $100K in workplace giving donations.


7)      Operate in a fiscally responsible manner.


  • Timely preparation and review of financial reports to include annual audit reports and other required filings.
  •  Consolidate banking relationship.
  • Build an operating reserve account to cover at least three months of operating expenses (National)
  •  Contract third party vendor for Whistleblower Policy.
  • Conduct staff benefit and salary review.