Dear Friends,

 

When the calendar crossed into October, HDSA began its new fiscal year. More than a mere time marker, the new year means a new plan of work, with new programs, a new outlook and new opportunities for the Society to do an even better job of providing Help for Today, Hope for Tomorrow to our families throughout the country.

            Before we developed our program of work for this new year, we spent a lot of time reviewing the programs already in place and listening to you - our constituents - to help determine what we do well, what can be improved and what unanswered needs we could provide solutions for this year. 

            As a result, we have a new plan for 2009-2010 that focuses on specific goals to strengthen our Society's reach, resources and impact.  Some of these goals may look familiar; others are brand new initiatives for HDSA; but all of them are vital to strengthening our ability to fight HD.   

            It is my pleasure to present to you the goals for each of the nine business areas of our Society for the 2009-2010 fiscal year.  Each goal, or target, helps move forward our work to have the strongest impact on our mission (programs services, advocacy and research), deepen our resources and reach (communication, revenue generation (national and field) and governance) and streamline our systems (financial management, operations and human resources.)  Together, these 54 targets will move us forward in our continued efforts to improve the lives of people with HD and their families.

            Regularly during this year, we will provide updates on how we're doing on this program of work.  Consistent with our renewed commitment to communication and collaboration we want you to follow our progress, understand our challenges and most importantly, we invite you to tell us what we think.  Because we cannot do it alone .  Caring for those with HD, supporting new generations affected by the disease and unraveling the mysteries of huntingtin so we can treat and cure HD requires all of us, working together.   

            Thank you for all you continue to do in the fight against HD, and I look forward to hearing from you.  

 

Talk soon,

 

 

2009-2010 Program of Work Goals

 

MISSION

 

Program Services: To improve the quality of life for people with HD.

  • Improve access to HD resources through the creation of a central Referral and Resource Guide. 
  • Update the HDSA publication library to increase access to up-to-date HD educational materials.
  • Develop and implement educational curriculum segments and evaluation tools for field-based education events.
  • Establish Best Practices for the HDSA Center of Excellence program.
  • Host CME event for Movement Disorder Specialists to increase understanding of HD.
  • Pilot "HD Connect" peer mentoring program.
  • Launch "Caregivers' Corner" series of webinars.
  • Lead development of new guidelines for genetic testing for HD.
  • Create and implement clinical trial education program on national and chapter level.
  • Develop Educational Programming for 25th Annual HDSA convention.
  • Publish core educational publications - one issue of The Marker and two issues of Toward a Cure - to expand awareness of the mission services.

 

Research: To further effective treatment to ultimately find a cure for HD.

  • Fund Coalition for the Cure for renewed multi-year period with emphasis on coalition-wide collaborative and advancement of discovery. 
  • Build utilization of HDTrials.org, including clinical study/trial investigators and registrants.

 

Advocacy: To improve access to care for people with HD.

  • Develop comprehensive public policy agenda for the organization with complementary position statements.
  • Host national Advocacy Day on Capitol Hill.
  • Secure at least 50 co-sponsors of HR678/The Huntington's Disease Parity Act of 2009.
  • Build nationwide advocacy network of lead advocacy volunteers, one per chapter and/or affiliate.
  • Increase e-advocates by 10%.

RESOURCES

 

Communications: To be the premier source of all HD-related information.

  • Develop and implement an updated HDSA Graphics Standards Guide.
  • Develop and implement integrated and comprehensive Communications Plan.
  • Increase media coverage through proactive outreach, including promotion of quality of life/caregiver survey results and "Faces of HD" campaign.
  • Redesign and expand Region/Chapter/Affiliate websites.
  • Develop Digital Archive to showcase organizational history and further brand development.
  • Increase leadership collaborations with other national/international HD groups.

 

Revenue Generation: To secure funding to enable our mission.

National

  • Raise $1.2 million in Major Gifts.
  • Raise $350,000 through Family Funds program.
  • Secure $125,000 through Memorials and Tributes.
  • Raise $400,000 through Individual gifts, including four Direct Mail campaigns.
  • Secure $1 million in Corporate support, including charitable gifts and educational grants.
  • Raise $75,000 in Foundations and Non-Corporate Grants.
  • Raise $200,000 for the Woody & Marjorie Guthrie Research Fund at the 13th Annual Guthrie Awards Dinner.
  • Generate $140,000 in donations through workplace giving campaigns.
  • Identify three new planned gifts; recognize $325,000 in bequest donations.

 

Field

  • Secure $100,000 in national corporate sponsorship for signature Team Hope Walk program; achieve $595K net for program nationwide.
  • Generate $100,000 in individual support through new market expansion activities.
  • Confirm 2 new affiliates and 1 new chapter.
  • Support Volunteer Development by hosting at least three Webinars, planning Leadership Training Day at Convention and expanding utilization of Extranet.  
  • Implement DonorPerfect database among Field staff.
  • Lead all HDSA regions, chapters and affiliates to successful accomplish their locally developed programs of work and budgets.

 

Governance: To ensure the Society functions in a responsible and effective manner.

  • Conduct comprehensive audit of Board (skills and diversity.)
  • Identify two new members for the National Board of Trustees.
  • Develop comprehensive Board resource manual.
  • Ensure all Committees meet at least twice in compliance with the bylaws.
  • Host Board Retreat.

SYSTEMS

 

Financial Management: To provide efficient and effective fiscal management to the highest ethical standards.

  • Prepare financial statements by the 25th of the month following month close.
  • Complete audit by February 28th for Board approval.
  • Develop Comprehensive General Accounting Manual, including Internal Controls Policy.

 

Operations: To conduct business in the most cost-effective and efficient manner.

  • Reduce general operating expenses for 2010 by 3% cumulative.
  • Implement full slate of Corporate Compliance policies.
  • Institute 3rd party Whistleblower vendor.
  • Begin upgrade of Society's IT hardware with new workstations and nationwide exchange server.
  • Complete interactive reconciliation among all HDSA systems.

 

Human Resources: To attract and retain highly qualified staff.

  • Revise Employee Handbook.
  • Develop and implement comprehensive employee Performance Evaluation Program.
  • Recognize staff with competitive salaries.