Q&A

Our mission was to invest in better lives for people with neurodegenerative diseases.

Adira Foundation worked with and for people impacted by neurodegenerative diseases. We focused principally, but not exclusively, on these five: ALS (amyotrophic lateral sclerosis), Alzheimer’s disease and related dementias, Huntington’s disease, multiple sclerosis, and Parkinson’s disease.

Adira addressed the isolating nature of navigating health care. For those with complex health situations like neurodegenerative diseases, time, money, energy, confidence and connections are particularly fragile.

Most assistance is siloed and comes either vertically or horizontally. Vertical programming is well-intended to help individuals—programs are funded from the top down to provide one service, one problem, one disease: transportation assistance for people with Huntington’s disease to a clinic, or diagnosis-based medication cost-sharing assistance. Horizontal programming is well-intended systemic help that is a mile-wide, an inch-thick and often awkward, hard for people to find, maintain, and use.

When you have a neurodegenerative disease and need a wide variety of services—ranging from a home health aide and speech therapy to insurance premium subsidies and financial planning services—navigating this confusing, fragmented system can be paralyzing and lead to feelings of isolation and depression, for everyone the diseases impact, including caregivers and loved ones.

Adira’s solution was to build and layer an additional stream of cross-cutting help—a superhighway of funding and programs—over and in complement to good programs, often disease-specific. We modeled that help based on successful large-scale integrated health efforts here and abroad. Most notable among these were those serving infectious diseases, such as HIV and tuberculosis.

With a founder and board who knew well the success of global health approaches like the United Nations system and the Global Fund to Fight AIDS, Tuberculosis and Malaria, Adira believed more collaborative work and financing, along with community building could help what was already out there and working.

Adira reflected the best of global health practices:

• We convened each key group of people working toward solutions.
• We worked in collaboration with these groups.
• The community served set the priorities.
• We operated with new, larger, more collaborative funders.

Adira accelerated the marketplace of ideas by and for people impacted by neurodegenerative diseases, particularly around those dozens of common issues often too big for any one group to own.

Adira’s model was to listen, learn and then act. We talked to people living with our five focus diseases, and their loved ones and caregivers to listen to their priorities and opinions. We also received information from our grantees’ and other community partners’ listening activities. Grants were made in response to what we heard.

We learned from a wide set of experts directly and indirectly impacting neurodegenerative disease care. Sometimes we partnered with them to learn through demonstration projects. Sometimes we learned by sponsoring research and reports. Sometimes we learned by hosting convenings for professional stakeholders. We also participated in various coalitions and workgroups, attended educational conferences and events, and stayed up to date with research, policy, and care practices impacting neurodegenerative disease communities.

Adira held three rounds of competitive grants. We granted to 501(c)(3) nonprofits in the U.S. and its territories with programing for our five focus diseases.

It meant more sources of funding for programs, more say in how programs were designed, and more camaraderie in shared identity working on better services for common problems.

It also meant more support, less isolation, and greater well-being. When patients are heard, when organizations act, and when the path between the two is made a little straighter and a little clearer, the journey is much more hopeful.