Adira Foundation

I am Greg Smiley, founder and CEO of Adira Foundation, whose mission is to invest in better lives for people dealing with neurodegenerative diseases.  With a master’s degree in public health from George Washington University, I have been fortunate to build a 20+ year career in both U.S. domestic and global health policy.  After nine years with the United Nations stationed in Washington, Johannesburg, and Geneva, I returned to the U.S. in 2017. 

An outdoor sports enthusiast, albeit a clumsy one, I survived a horrific high-speed cycling down a mountain road in South Africa in November 2013.  I was partially de-faced and lost significant muscle, bone, and facial tissue.  After four years, 12 reconstructive surgeries, patience, privilege, and support, I am the happiest Greg Smiley I have ever been.  I reflect on my good fortune daily. 

Yes, I still cycle daily—though friends wish I would take up bird-watching. 

Navigating health is hard even at our best.  Navigating care while sick is frightening, while gravely ill, it’s downright defeating and too much to take on alone.

Adira’s vision: assemble sister disease states, create shared identity, then co-finance around what they have in common, to complement existing good programs typically on the unique.

We largely parrot the funding cycle of the Global Fund to Fight AIDS, TB & Malaria to pilot essentially a U.S. (at first) Fund for ALS, Alzheimer’s, Huntington’s, MS, and Parkinson’s.

Our cycle is founded in seven actions:  Assemble, Convene, Prioritize, Grant, Evaluate, Report, Evolve.  The point-of-view of those most affected—patients, caregivers—must drive each step.  

Wrap-around programs are not new but few  take hold, grow, and thrive.  Though a long runway is needed, complex problems need communal responses.  

By working on what is communal we fortify what is unique.  We weave community for action.

Adira means “brave.” Our bravery is in taking on an ambitiously large patient population hoping success might be transformative. 

Current health programs fill some gaps but still fall short.  Most are either vertical—helping individuals in a precise way, though limited in scope.

Some are horizontal—the scope is ambitious, systemic but imprecise in how it helps individuals. 

We are looking for a third way, a diagonal ambition that helps individuals while also improving systems. 

At least 8 million people in the U.S. live with one of five sister neurodegenerative diseases.  The number will swell to 11 million this decade as the population ages.  Millions more care for them.  Most every American knows someone with one of the five—giving our project wide appeal. 

Help does surface, but often designed from the helper’s point-of-view.  The easiest way to help is to fund what you can count—e.g. 100 transportation vouchers for 100 ALS patients to clinical care appointments.

Few go further, tackling the more pervasive, common fears such as caregiving burnout, transitioning from work, confidence building in making decisions, a path to long-term care.      

If typical charitable efforts design flowers, we hope to nurture the common green stem among them.  

Adira’s funding model takes the best thematic elements of four consequential programs to bundle a better collective effort to complement what’s working. 

The four programs include the Joint United Nations Programme on HIV/AIDS (UNAIDS); the Ryan White Program; and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). The fourth which serves as the most direct model for action is the Global Fund to Fight AIDS, TB, and Malaria (Global Fund). 

The four programs are similar in that they are ambitious, integrated efforts forged under  intense political will, appealing to a wide universe of donors to address the deeply interconnected stressors behind the HIV/AIDS pandemic, and to a lesser degree tuberculosis and malaria.  The most resonant themes applied liberally to Adira:

• Health is best measured by both medical as well as social determinants
• The point of view of those most affected is paramount
• Joint coordinated action helps those typically left behind
• Neutral convening platforms allow stakeholders to set common goals 

So from our seven actions we in the simplest terms:

• Assemble then Convene like the UN
• Prioritize like Ryan White
• Grant, Evaluate, and Report like Global Fund and PEPFAR
• Evolve as they all have done.  

The project helps people most affected by neurodegenerative diseases and funds non-profits to better serve them. 

We are convening patients, caregivers, and providers to say:  Tell us the universe of your needs, share with us which ones are decently met; what is still remaining and of those which are most urgent. 

As an example:  Patients might generally report decent access to neurologists, therapies, and transportation.  But may consistently report these themes as under-serviced:

• Transition away from the workforce
• Confidence building for making decisions
• Caregiver burnout
• Depression and isolation. 
• Planning for long-term care

Our funding cycle mandate would then be around programming next to those five common needs. 

We have pilots underway in 2020 but hope to fundraise for a large-scale Round Two in the coming months.  In our inaugural grants this year, we funded twelve non-profits around the country serving all five diseases.  We are convening those twelve grantees in July to work on common ground.  A Parkinson’s disease entity in Oregon may not typically work with an Alzheimer’s nonprofit in Houston, or an ALS association in Virginia. Those are three of the 12, however, and we hope we find a common next step forward.  

As humans, we celebrate what makes us special.  Yet what makes us special can isolate us. To complement that, we must also simultaneously forge bonds over that which makes us typical and common. 

Most charitable health efforts focus mostly on the easy first half: what defines us.  Yet inattention to our other half keeps us less than whole.  For the sickest among us, this gap often yawns wide open.   

Umbrella (multilateral) efforts can help.  Shared identities like the LGBTQ movement address common problems such as discrimination.  The more ambitious—e.g. the European Union—exceed far beyond advocacy. 

We need more umbrellas.

Adira was birthed from a mixture of three experiences:

• First my career working among four successful ambitious, integrated health efforts:  Ryan White, PEPFAR, UNAIDS, and Global Fund.
• Second, my personal journey as a complex-needs patient navigating care after a life-changing cycling accident in South Africa
• Third, as a common, unremarkable person who asked colleagues, idols, and friends for counsel from their point-of-view, to test and snowball this idea into something viable. 

But my even my super-privileged, supported life didn’t prepare me for the complexities following my accident:  loss of facial tissue and thus loss of face.  Issues of oral surgeries, grafting, nerve pain, trauma counseling, worries about losing my job, health insurance, plastic surgery, dealing with family, isolation.  It was hard on me, and I am awash in self-advocacy and affluence.  How does everyone do this? 

After 12 reconstructive surgeries over the next four years, I left the UN in 2017, moved back to the U.S. to take over a nonprofit in distress, secured some limited seed funding to birth a new comprehensive nonprofit to help multiple complex diseases at the same time, gathered a few colleagues to plot out which ones and how, and then launched Adira in 2019.  

“If we’re not here to help each other out, what are we here for?”  This is not a motto, but the unspecific personal point-of-view that I come home to when I struggle for meaning or purpose. 

I know:

• having pain and not adequately narrating it to others.
• struggling for the three-sentence phone summary people want to hear and failing at it 
• feeling my experience is special but realizing its typical, unremarkable.

I wanted to help populations whose complex paths mirrored my own. A handful of trusted colleagues interested in joining me for this ride researched and volleyed options such as Diseases of the Aging and broad categories like Pulmonary, Neurology, and Oncology.  We tried to stratify Costliest Diseases. 

Each of us had personal or professional experience in Huntington’s, MS, and Alzheimer’s.  We saw the huge diffused need common among them but with Parkinson’s and ALS as well.  Caveat:  We don’t know if these five are right!  If these five are too big/ too small / too exclusive…

We asked health economists and academics but none assured us we chose the right slice of pie. 

We will try this. We’ll undoubtedly fall at points. We will learn and press on. 

I have worked my entire career in public health and lived seven years as a patient.  

Master's degree in public health from George Washington University in 1997.

Worked intimately with—and even for—the four programs I am using as models for Adira:  Ryan White AIDS Program, PEPFAR, UNAIDS, and Global Fund.

Fortunate to work for the President Clinton's U.S. Advisory Council on HIV/AIDS.

Nine years with UNAIDS in Washington, Johannesburg (serving eastern and southern Africa), and Geneva working on strategic interventions, policy, and communications

Shepherded the wind-down of a large U.S. non-profit in distress as its last CEO.

As a cycling accident survivor in South Africa, I navigated twelve reconstructive surgeries since 2013. 

Thirty years of volunteer commitment and activism--currently serving with Virginia’s Medical Reserve Corps around community testing for COVID-19.

In 2013, I endured a life-changing accident, cycling down a mountain road near Johannesburg.  With multiple traumatic injuries, assembling a care team was like a fantasy football league—only the stakes were high, and I was expected to play quarterback.  To the maxillofacial surgeon I had principally lost muscle. To the pain specialist, I was potentially a faker. To the prosthodontist I was a project. To the trauma counselor I was a “survivor.” To the plastic surgeons I was a before/after photo-op. 

I had significant experience support, but the path forward was muddy. What about people without the same advantages?

Over 12 surgeries and seven years led me here: we all need a wider, more equitable platform for the most vulnerable and isolated.

People need help in pervasive, but often immeasurable, unexciting ways. Issues of confidence, caregiving, financing and planning are too hard to envision, count, and measure.

Yet, to deal with this problem, as I dealt with my own adversity, requires incredible perseverance amid setbacks and bigger thinking to sift through complicated, moving parts.

A multilateral model places resources in ways that lift barriers, distribute funds  intentionally, while offering both chronic care and prevention for some uncommon, under-recognized co-morbidities. 

After leaving the UN system, I moved back to the U.S. to lead a health nonprofit in distress. I pledged to transform it through much more diversified funding and programming based much more on the patient point of view.  I hadn’t realized the scope and severity of the nonprofit’s problems. It had money in the bank but flawed programming. Within months of my start date, the board and I knew we needed to wind it down. Safely landing that very large plane that helped thousands of people and employed dozens, took equanimity I never knew I had.  I triaged all decisions on how to minimize impact:  Current patients first, larger charitable mission second, unaware staff third. The board donated some remaining unrestricted assets to Adira Foundation, which I shared with the IRS for the 2019 approval of a 501(c)(3) application. 

I’m grateful for all I have experienced.

I know enough to know there is much more to know. Adira will only succeed if others are invited to join, build, poke holes, offer time and thought, and show up. 

I lead by stepping back and letting others in. They, too, likely believe we exist in part to help each other out.

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Umbrella organizations exist, but mostly focus on advocacy, awareness, and education.  The U.S. government at CDC, NIH, and elsewhere does work on nuero populations as a whole, but on research and prevention, not really on services.   

We are aiming to take the typical umbrella further and try to co-finance larger common programs to help people. 

It’s hard to design for 330 million Americans.  Similarly, trying to help them only 30,000 at the time (the U.S. prevalence each for Huntington’s as well as ALS) is already being done.   What if we can be brave enough to bite off 10 million at the time, work on commonalities, complement current good efforts, and then replicate until all are equally served. 

As a neutral platform to facilitate the larger conversations that need to happen, perhaps we at Adira can pilot a model to transform health care, one large chunk at a time.  

Our approach to change is in response to seeking a third way to complement vertical (for individuals) and horizontal services (health systems). Rather than just serving individuals or systems, we have a diagonal ambition that attempts both:  helping both individuals while also improving systems.  

With 8 million people in the U.S. we feel we have a catchment area that is large enough to transform systemic change but still see change in actual individual people as well.  If we can do well with these 8 million, perhaps we can replicate to other communal populations

This is our approach to change (click to expand):

Many successful models already exist--and have seen great impact--to inspire and inform Adira’s approach to change. The Global Fund, the Ryan White Program, and the Joint United Nations Programme on HIV/AIDS all demonstrate the complementarity of large-scale, ambitious, co-financed programming that help undergird existing successes for complex, high-cost health conditions. See our table of complementary programs that inspire us for how.  In this table, we show examples of how bilateral and multilateral programs can join forces to fill complicated gaps.  

A final way we are working on this is by seeing how change happens through bilateral programs and, in the same way that multilateral models have seen success globally, are theorizing Adira could have the same impact with more  priorities that complement those. See this chart for more.

If we pre-suppose that people with complex diseases like these five have dozens of potential needs, perhaps we can find ways Adira can fill the gaps.  If, for example, patients and caregivers consistently report that typical programs adequately address some needs--in blue on the chart-- but they name others listed in green, to be more pervasive, common and urgent, then those would be the set priorities for our  next round of funding.

We'd be the green to complement the current good work done in blue.  

We awarded grants to 12 nonprofits around the country that collectively serve roughly 40,000 people.

One year from now, we hope to have expanded exponentially and have reached up to 300,000 people not all through direct outreach, but who are connected to us through convenings, storytelling, partnerships, grantmaking and our network mapping and resource hub program priorities.

In five years, we want that number to reach 2 million as our rounds of grantmaking grow wider and more streamlined and our program projects grow in scope and reach. Roughly 8 million people are living with one of our five neurodegenerative diseases in the U.S. That number could grow to 10 million in the next five years. Every one of those people comes with a number of loved ones, so we estimate our audience to be in the dozens of millions.

Please view a link to our timeline for year one.

We intend to look to the accomplishments of the Global Fund while modeling our timeline for the first five years.

The Global Fund was able to disburse $865 million out of the $2.6 billion committed to support 126 malaria grants in 85 countries over their first 5-year period.  We don't presume to be that large, that global so quickly.  But we do use the Global Fund model as a spirit for evolution.  Round Three was better than Round Two which was better than the first....

We will complete our three-year strategic plan when we hope a larger class of board members on board in October.  With a larger board and some early results to share, we plan to hammer out the details then.  

Adira is ambitious and as such faces barriers largely related to scale and scope.

We face barriers of participation—especially in a post-COVID world. To impact change for such a numerous group of people facing complex health barriers, we must hear from an adequately large number of people impacted by neurodegenerative diseases to know our priorities truly represent what they are seeing. And we need to hear from a large and diverse representation of sectors working in the same space.

And from all of these groups we need confidence and buy-in. The model won’t work unless there’s an effective feedback loop that makes Adira accountable to the people its serving.

Adira faces barriers in ensuring its work is scalable and repeatable.

Moreover, we need a wide range of donors to ensure the influence is diffused enough that we can establish trust that our transparent programs are also sufficiently objective and free from donor influence.  

Adira has $3 million in seed funding and is already using that to both help people now and to build a constituency and infrastructure to develop support in the future. We can only do this with the buy-in and support of many established, innovative, and equally ambitious partnerships.

We are reaching out to like-minded institutions wherever we can to help collaborate on similar missions.  Institutions such as the Commonwealth Fund, and the Camden Coalition are examples.

Mostly, we are using our runway to talk to as many patients, caregivers as possible.  We have to listen, listen, listen if we are to truly build something representative, responsive and fair.  

Partnerships are key to Adira’s success as we reach throughout the nation to connect with individuals and systems impacted by and impacting the neurodegenerative disease communities we seek to serve. We’ve been working hard over the last year building strategic partnerships.

We’ve engaged George Washington University’s School of Public Health in a research project to better understand the best practices and lessons learned that the architects of PEPFAR, Ryan White, UNAIDS, and the Global Fund might illuminate for Adira.

We’re collaborating with the National Alliance of Caregiving to co-launch an interactive, online ‘hub’ to support caregivers—especially in light of COVID-19. The hub will engage multiple organizations that serve patients and caregivers to share their best information, resources, and tools to specifically address concerns we hear first from caregivers, but with the intent to expand to various audiences in our community.

We’ve partnered with Virginia Navigator to take our Network Map prototype (interact here) and customize it for their clientele.

We’ve engaged GOODSTOCK Consulting to help co-design convenings, conversations and internal infrastructure to ensure we embrace from soup to nuts our commitment to communities of color. 

In July, we enacted an agreement with StoryCorps that will result in a variety of personal conversations recorded and produced to tell stories of people living with and impacted by neurodegenerative diseases. It will be an intentional effort to reach people whose stories aren’t often heard or told to shape the narrative of this disease experience in a way that can inform our programming.

The Adira business model provides impact to communities with neurodegenerative diseases by offering funding, programming, and engaging in partnerships.  Our financial framework in our first year is largely supported by seed money gifted from a non-profit organization as it closed. This provides Adira with a three-year runway to a viable, sustainable organization, enabling Adira to move forward offering options for our key beneficiaries: people with neurodegenerative diseases. Our business plan includes a development, marketing, and diverse partnership effort to further increase and support the efforts Adira is engaged in.

Adira’s board of directors approved and is committed to a gifts policy that clearly outlines that diversified donor activity is a mandate.

As part of the Adira growth and sustainability plan, the board of directors membership is posed to increase from the current 8 members to 11 members, in a diverse and meaningful way and to also include representation from the disease communities Adira focuses on. Meeting in October, the expanded board will convene around a strategic three-year plan for growth.

The commitment to the Adira mission of bettering the lives of people with neurodegenerative diseases is demonstrated through our program development, our small grant initiative to organizations that serve and provide to neurodegenerative disease communities and caregivers. The intent to move into a multilateral model would borrow from the Global Fund, creating two primary funding partners sustaining and disbursing funds to organizations and communities in need, with Adira as the central point of contact.

Our commitment to sustainability and growth is one of the reasons for our approach to the multilateral model. To best address the increasing population of people with chronic, complex illness, in particular neurodegenerative diseases, Adira is committed to effectively reach an ever- widening circle.

In our first year of operation, we have formulated, and the board has approved, a development platform to secure funding from a range of donors including individuals, corporations and foundations. We are also exploring donors who are invested in social impact ventures as well as venture philanthropy. We are mandated to create a system that raises funds in a diversified way, allowing for investment from sources demonstrating concern for the chronic population and wanting to see, as Adira does, programming that responds to needs for people with chronic, complex illness with a long-term approach in mind.

Adira was gifted seed funding in the low seven figures. It provides a three-year window of activity, and now in our first year of operation we are set to begin raising funds to augment and enrich our philanthropic and financial positioning. Given this is year one and in 2020, like most non-profits challenged with the circumstances presented by COVID-19, we are seeking funds through online campaigns, foundation and corporate support, and having conversations with venture philanthropists for programs that are of current benefit (COVID-19 related) and are sustainable and applicable as the landscape changes.

Adira is seeking to implement a multilateral business model that requires a three-pronged approach to funding. Adira is seeking funds to develop the first phase of our efforts and ensure that program development and funding national organizations serving people with neurodegenerative disease continues through our current practice, and establishing a partnership with other funders, government, foundations and large national non-profits to create a framework that reflects the business model of the Global Fund. This will require several million dollars ($5 million and upwards) to form and activate. Adira has engaged the George Washington University research arm to further investigate factors that will help to advance efforts in establishing a multilateral fund for chronic and neurodegenerative diseases.

Adira is spending $1 million in support of programs that include small grants to organizations that serve people with neurodegenerative diseases, two technology platforms: The Network Mapping project and a “hub” for people with neurodegenerative diseases (in partnership with a national organization), convenings with neurodegenerative communities and agencies, convenings with communities of color and underserved within the neurodegenerative diseases, and a national project with StoryCorps on stories from patients and caregivers that will be housed at the Library of Congress.  Larger grant awards will go out in September 2020.

To help galvanize interest and support for this ambitious project. We will need all of the voices, perspectives, and resources we can get.  

The Elevate Prize offers such incredible benefits that they could bring almost any idea from a spark to real change. But for Adira, the impressive access the prize is offering take an ambitious, brave, thorough plan just getting started into a full-fledged movement that would have enough of an audience of input and donors to truly transform health interventions for people with neurodegenerative diseases.

As mentioned, we face major barriers in the scope and scale of our project. We need to reach a wide range of people living in or working in/with the neurodegenerative disease communities

We believe in our message. Having the power of this prize to back and amplify it would help us ensure the right people were in the room when we set priorities for funding.

Because the funding model is by design complex, we need significant buy in from a wide range of sectors and professional development services would expedite those efforts. We are looking for constant feedback on our model to ensure it gets better with every round of funding—and we would use the top thinkers and experts through the Prize and MIT for just that purpose.

I personally thrive—and so does Adira—when I can talk about my ideas with people from diverse perspectives. Networking with the Global Heroes and partners would allow us to share, help each other—elevating everyone’s projects together. 

If we are able to host a full grand convening in 2021 to listen to what gaps are most urgent, to set priorities among them, to fundraise against them and then program towards them, we will need all stakeholders to participate.

A speculative balance of stakeholders might be:  51% patients and caregivers; 15% private sector; 15% public sector; 15% non-profit sector with 4% other influencers, then we will need to engage all of these sectors to get programs people can believe in.  

Adira’s intent is to explore partnerships with National Alliance for Caregiving, Mental Health America, National Health Council and the Gerontological Society of America. Additionally, Adira has connected with Commonwealth Fund, SCAN Foundation, Camden Coalition, and joined in membership with Exponent Philanthropy. The multilateral efforts have led Adira to working with George Washington University’s research arm, and we are also like to partner with potential government agencies that may well align with efforts to create a multilateral platform. Those agencies include NIH, CMS, CDC, Office of Aging, HHS, ACL, HRSA, SAMHSA and the office of Veteran’s Affairs. 

Through Adira’s grantee exchange, connections and continued partnerships have formed with organizations on national and regional levels for the five neurodegenerative disease communities: ALS, Alzheimer’s, Huntington’s disease, MS, and Parkinson’s disease.

We need partnerships like each of these to inform our priority setting, for co-financing inventive projects, to attend and weigh in on convenings and many other ideas and resourcing that will support Adira's model and growth.