Future Plans

Each year the AFTD Board of Directors sets of priority goals to guide the organization’s work. In 2009, thanks to a generous gift from an anonymous donor, AFTD is engaging in longer-term strategic planning for the first time, working with our key stakeholders in the scientific, medical, and caregiving community to plot a course over the next several years that will speed us toward our mission goals. We look forward to sharing the key points of this strategic plan toward the end of 2009.

Goals for 2009

Research:

  • Award $330,000 in research grants, including $110,000 for the Laden Family FTD Fellowship and $100,000 for FTD Drug Discovery.
  • Fund and publish an FTD Landscape Analysis, a document that summarizes all research funding for FTD over the past 10 years and identifies gaps to guide future research efforts.
  • Conduct a series of focus groups with caregivers designed to gain insight into their experiences with and perceived barriers to the issue of brain donation. This study is funded by NIH and conducted in partnership with Indiana University.

Support:

  • Create a Caregiver Respite grant program.
  • Create a new telephone support group for FTD spouses who are also caring for young children.
  • Host our annual meeting in Los Angeles in June in coordination with UCLA; support caregiver conferences in other areas of the country.
  • Continue to foster our network of support groups across the country by hosting quarterly phone calls and creating a listserv for the group leaders.
  • Maintain our toll-free Helpline and Web Inquiry service.

Education:

  • Create a new website.
  • Engage the Education subcommittee of the MAC to review and update all educational materials.
  • Develop training materials for residential care facilities.

Awareness and Advocacy:

  • Identify volunteer leaders for each of the regions in the US and Canada that define our grassroots network; begin to engage the network in identifying local resources and supporting national issues.
  • Participate in the Coalition to End the Two-Year Wait for Medicare Benefits.
  • Create an AFTD Facebook social network and lay groundwork for a national awareness campaign.