Adira is a national 501(c)(3) public foundation founded in 2019 in Richmond, Virginia, with offices in Richmond and Washington, D.C.

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

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

Adira was founded by Greg Smiley, following more than 20 years’ experience in both U.S. domestic and global public health policy and management. Having sustained multiple traumatic injuries during a cycling accident in 2013 and having multiple reconstructive surgeries, Greg knows firsthand the difficulty of navigating multiple challenges at once.

Adira is led by a board of directors with experience in medicine, nonprofits, communications, governance and management, advocacy, and coalition building.

Adira also receives guidance from its External Affairs Advisory Roundtable.

Adira’s staff members have many years of experience in patient advocacy and support, and nearly all have been touched by one of Adira’s five focus neurodegenerative diseases.

Most importantly of all, we are driven by the people most impacted by neurodegenerative diseases, most notably through our “Sounding Board” among other mechanisms.

Adira is addressing 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.

Today, 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 is 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 model that help based on successful large-scale integrated health efforts here and abroad. Most notable among these are those serving infectious diseases, such as HIV and tuberculosis.

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

Adira will reflect the best of global health practices:

  • We will convene each key group of people working toward solutions.
  • We will work in collaboration with these groups.
  • The community served will set the priorities.
  • We’ll operate with new, larger, more collaborative funders.

Adira accelerates 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 is to listen, learn and then act. We talk to people living with our five focus diseases, and their loved ones and caregivers to listen to their priorities and opinions. Listening projects are always underway. We also receive information from our grantees’ and other community partners’ listening activities. Grants are made in response to what we hear.

 

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

Since founding, Adira has held two rounds of competitive grants and opened its third round in September. We grant to 501(c)(3) nonprofits in the U.S. and its territories with programing for our five focus diseases.

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

It also means 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.

We could use your help and input for our storytelling, learning and solution-finding activities. You can find more detail about various ways you can join us on our Get Involved page. But below are some specific ways you could help right now.

You can submit your input and ideas to info@adirafoundation.org.

Listen:

  • Tell us your name, three things about you, and your connection to neurodegenerative disease via text, audio or video. You can email attachments or capture and upload photos/videos/text easily from your phone at adira.memfox.io/storytelling.
  • Join our Sounding Board to offer your feedback and advice on an ongoing basis.
  • Do you have pet peeves? Terms that you hate? Things you’re tired of people assuming about you? Tell us.

Learn:

  • Send us any needs assessments, research studies or articles that might inform our work.
  • Tell us about any other resources or skills you have that could be shared among Adira’s five similar disease communities.
  • What has your organization learned already about the communities you serve? Share the top five ideas with us.

Act:

  • Send us an idea for an inventive solution or program we could consider.
  • Volunteer to pressure test some of our upcoming projects such as our virtual caregiving platform or resource navigation tool.
  • Sign up for Adira’s emails to stay up to date on projects, grants, campaigns, events and more.
  • Invest in better lives for people with neurodegenerative diseases. Donate today.