HDSA 2011 Goals - Mission in Action

October 20, 2010

Dear Friends,

As we begin a new fiscal year, I wanted to thank you all for your tireless efforts and dedication as we continue to align with the Plan of Work, the Society's organization-wide goals that help us to carry out HDSA's mission.

It is my pleasure to share with you the Society's Plan of Work for the 2010-2011 fiscal year and to update you on the successes of the 2009-2010 fiscal year.

At this time last year, I unveiled to you our Program of Work which outlined 54 specific targets (goals) for achievement in our reach, resources and impact. Each target was vital to strengthening our ability to fight HD and ensured that we moved forward in continuing our efforts to improve the lives of people with HD and their families by deepening our mission work, building our capacity and streamlining our systems. These essential initiatives helped lay the ground work for the coming fiscal year.

I'm proud to report that overall, 96 percent of our goals for the 2009-2010 fiscal year were achieved or neared completion before the fiscal year closed on September 30th. The 2009-2010 fiscal year was the first year with a full Program of Work that included reorientation and realignment of our business areas, making this is an exceptionally high rate of achievement. To summarize our success, we completed 52 percent of targets, 44 percent are near completion and only two targets were not achieved due to external factors. This was achieved because of you!

Let's think back for a moment to review some of the many the accomplishments of our last 12 months! Since October 2009, we:

Launched the HDSA Connect program, our Caregiver's Corner series, the HDSA Diplomat program and held the first-ever meeting of all of our Center of Excellence Directors;

Secured more than 150 co-sponsors to the HD Parity Act (HR678), increased our e-advocate database by more than 10 percent and are on our way to a nationwide advocacy network of volunteers;

Funded the HDSA Coalition for the Cure and directly helped raise awareness of the importance of clinical trials through HDTrials.org, educational resources for field-based events and partnerships with the global HD Community;

Began rolling out chapter/affiliate websites that integrate to HDSA.org to create one comprehensive web portal for the entire HD community (roll out to be completed 12/31/10);

Expanded our complete set of resources for chapter/affiliate communication by centralizing information to the Extranet, hosting regular webinars, investing in field staff training and launching the new Graphic Standards Guide;

Grew the Team Hope Walk program to more than 50 walks nationwide;

Established vital operational and financial policies to develop our staff, protect our organizational integrity and ensure that every HDSA supporter is valued;

Cut our operational expenses by approximately 3 percent; and

Raised more than $8 million dollars to fund the Society and bring help for today, hope for tomorrow to everyone affected by HD!

Additionally, in 2010 we launched a Strategic Planning process for the Society. This new plan, which is in development by the Board of Trustees and will be finalized mid-2011, will clearly articulate our long-term goals and define a path to the growth that we all expect of HDSA.

In preparation for this Strategic Plan, the 2010-2011 fiscal year Program of Work is organized around seven key strategic statements instead of our ten internal business areas. By doing this, we ensure that every target has a strategic purpose and reinforces alignment so that we are one, unified HDSA working in synchronicity for the care and hope of all we serve.

On the following pages, you'll see the 57 targets for our new fiscal year, building upon our successes and always challenging us to be the most effective and efficient HDSA we can be. Through the monthly issues of the "HDSA Field Update", you'll be able to personally monitor our progress. And as always, we welcome your feedback.

The fight against Huntington's disease requires all of our community working together on the small and large projects alike. From the monthly financial statements and projections to the messages we carry to the steps of Capitol Hill, everything we do for HDSA enables us to make a greater difference in the lives of everyone affected by HD.

Thank you for all you continue to do in the fight against HD. Your ongoing support is vital to HDSA's success and the impact of your partnership is beyond measure.



Louise Vetter

Chief Executive Officer



2010-2011 Program of Work Goals

1) Build an HD Community-service organization.


oIncrease and expand resources for the HD community utilizing pilot projects introduced in 2010, mining for additional online resources, and creating new tools that will assist in obtaining services.


o HDSA Connect pilot project to expand to 2-3 additional chapters that have Social Worker.


o Resource & referral database: Mine additional resources for care section of national web site in order to improve quality of life for people with HD and their families.


o National convention will integrate a premier educational program with social networking aspects to offer the HD community a well-rounded experience.


o HD Disability 101: Building on HD Parity Act and webinars, create tools that will offer a roadmap to disability for a person with HD using current criteria.


oCreate educational programming for healthcare professionals, legal entities and the HD community that will promote greater engagement.


o New social worker training: By developing a standard HD curriculum to educate new chapter and center social workers about HD, the learning curve can be shortened and the social worker can begin to assist families more quickly.


o Support group leader mentoring program will promote ongoing education which will lead to cohesion and communication across the support group network while serving as a quasi-professional training for support group leaders.


o Professional Training provides continuity of new information to HDSA funded social workers.


o Field Based Education Program will integrate Clinical Trials Workshop and Advocacy Workshop into educational programs scheduled in 2010/11. Goal is to include both workshops in 50% more field based educational events in 2011 and increase number of educational events by 20% to 24.


o Law Enforcement/Legal advocacy tool kit: Caregivers and social workers have expressed a need to have a tool kit to educate local law enforcement about HD. Developing this will foster better understanding in the community and avert confrontations.


oAugment online library of materials with interactive communication vehicles and foreign language pamphlets.


o Develop an "Ask the Social Worker" column that would provide HD community with source for problem solving, general info, etc. After several months, answers would be archived by topic for indexing at later date.


o Develop foreign language translations of Family Guide Series and Fast Facts.

2) Become the premier communicator of HD information.


Increase media awareness coverage of HDSA and HDSA programs by 10 percent.


Establish and manage one integrated communications calendar for coordinated outreach across Society.


Complete roll-out of Region/Chapter/Affiliate websites.


Revise HDSA.org to create more intuitive navigation and more people-focused look.


3) Remove barriers to quality care.


Expand physician understanding of HD Education through web based CME courses and revision of national handbook.


Establish Best Practices for long-term care facilities to increase the number of placements available to people with HD.


Increase grassroots movement for advocacy by continuing to engage community using a variety of tools and initiatives.


Near passage of HD Parity Act by re-signing all current co-sponsors to new bill (reintroduction in Jan 2011) and have significant engagement by Senate on companion bill.


Develop comprehensive public policy agenda for the organization with complementary position statements.


4) Support HD research & communicate its impact.


Continue to support the HDSA Coalition for the Cure.


Engage stakeholders in HD scientific advances through national publications and educational initiatives.


Roll-out HDSA Diplomat program to create field-based network of Clinical Trial ambassadors with a goal of identifying and training a Diplomat in 50% of the chapters/ affiliates by end of 2011.


Enhance community understanding of research trends and clinical trials.


Increase enrollment in HDTrials.org by 10% and continue to build utilization of site by trial sponsors.


5) Grow volunteer involvement.


Activate Development Committee to support and grow national fundraising capacity.


Identify nationwide 2 new affiliates and 1 new chapter.


Build knowledgeable and informed field leadership through expanded communications, training and volunteer development opportunities.


Expand DonorPerfect use in the Field.


Complete execution of 2010 National Board Retreat Recommendations.


Ensure all National Committees meet at least twice a year in compliance with the bylaws.

6) Increase revenue to grow organizational capacity.


Raise $900K in Major Gifts.


Raise $275K in Family Funds.


Raise $175K through Tributes/Memorials.


Raise $217,500 through Direct Mail program.


Raise $240K through sweeps campaigns (BMW, winter spectacular and summer sweeps.)


Raise $40K through webstore and related third party campaigns, including Amaryllis.


Raise $120K to underwrite 2011 Convention.


Raise $700K in corporate support for educational programs and general charitable giving.


Raise $50,000 in Foundations & Non-Corporate Grants.


Net $30K for the Woody & Marjorie Guthrie Fund through benefit concert (November 4, 2010).


Receive $350K in bequest income (based on rolling average) and secure 2 non-bequest planned gifts.


Generate $100K in workplace giving donations.


Secure $100,000 in national corporate sponsorship for Team Hope Walk program.


Achieve 5% growth in net revenue over prior FY 09/10 for the Team Hope Program.


Through new market expansion activities, generate $100,000 in additional revenue.


7) Operate in a fiscally responsible manner.


Prepare financial statements by the last Monday of every month.


Complete financial audit by February 28th for Board review.


Full implementation of Accounting Manual and Treasurer's Manual.


Reduce general operating expenses for 2011 by 2% cumulative.


Implement new budgeting and forecasting software.


Contract 3rd party vendor for Whistleblower Policy.


Conduct staff benefit and salary review.