Flagship Projects
Beyond competitive grants, Adira entered into five additional direct partnerships on the biggest, most urgent issues in the neurodegenerative disease community. These are those Flagship Projects.
Funded Directly, Designed Together
Adira's competitive grants funded organizations responding to priorities Adira heard. Flagship Projects were different. These were urgent needs Adira heard so consistently that they couldn't wait for the next grant round.
Instead of waiting, Adira partnered directly with the best-positioned organization to build something new.
*Adira used "Flagship Projects," "Demonstration Projects," and "Direct Awards" interchangeably. All three refer to the same five non-competitive direct partnerships.
Five Partnerships, Five Urgent Needs
Caregiving
Take Care Community, in partnership with the National Alliance for Caregiving
Caregivers needed somewhere to find resources sourced for caregivers, by caregivers. COVID-19 made the need urgent.
Adira partnered with NAC to build Take Care Community, an online clearinghouse organized around the topics caregivers themselves named as their biggest challenges, codified in the Caregiving During COVID-19 Framework.
Navigation
Network Map, in partnership with VirginiaNavigator
"Navigation" was the most universal unmet need across the five disease communities. People had trouble finding services, much less combining them.
282 programs added 75 data points each 12,000+ search terms
This work directly seeded the Rural Project funded by Bristol Myers Squibb Foundation.
Life After Work
Disability Education and Legal Advocacy, in partnership with the Huntington's Disease Society of America
Adira's first Flagship Project. Started with SSDI for Huntington's. Grew in direct response to families' requests.
Expanded into employment, health insurance, legal & financial planning, long-term care disability rights. By the end, Parkinson's, early-onset Alzheimer's, and MS organizations were reaching out to partner.
35+ webinars, toolkits, worksheets
Story Collection
Changing the Narrative, in partnership with StoryCorps
Recorded conversations between lifelong friends, spouses, siblings, parents and children impacted by ND. Spotlighted day-to-day lives and relationships, not just diagnoses.
A deliberate act of changing the narrative around ND from clinical to human.
Peer Support
Memory Advocate Peers, in partnership with CaringKind
A peer-mentor program developed and led by a spousal pair impacted by Alzheimer's disease. The mentors are former Alzheimer's caregivers themselves.
Programs designed and led by people with lived experience, not just designed for them.
What Direct Partnership Made Possible
Competitive grants discover what's possible. Direct partnerships deliver what's already known to be urgent. Adira used both.
Take Care Community is still active. The network map expanded into four states. HDSA Disability Program continues. The StoryCorps archive remains. Memory Advocate Peers continues with CaringKind.
The Flagship Projects were never just Adira's. They were always partnerships, designed to keep working after the partnership ended.