Adira Foundation investing in priorities named by people impacted by neurodegenerative diseases

RICHMOND, VIRGINIA — Adira Foundation granted nearly $220,000 to three projects across the country that will actively address some of the most pervasive needs shared among people impacted by ALS (amyotrophic lateral sclerosis), Alzheimer’s disease and related dementias, Huntington’s disease, multiple sclerosis and Parkinson’s disease.

The three nonprofits—Mark Morris Dance Company, University of Pittsburgh’s School of Nursing and Memory Care Home Solutions—are grantees of Adira’s third round of competitive funding, its Fall 2021 Pervasive Needs Grants.

Each project addresses at least one of three priority areas for this round of grants:

  1. Simplifying clinical research.
  2. Preparing for future threats to livelihood.
  3. Thriving again in common pursuits.

People living with neurodegenerative disease, caregivers, and previous grantees shared these priority areas with Adira through a listening period held during the grant cycle. For this round, Adira included input from nearly 2,000 people—five times more than the previous round.

The grantees were selected by an independent review committee, a majority of whom were people living with neurodegenerative diseases or caregivers.

Founder and CEO Greg Smiley said:

“We are proud to award these Round 3 grants that deliver on what people say they need but still aren’t getting.  People with neurodegenerative diseases fear losing their careers, incomes, friends, hobbies, their very lives….These grants, as a start, directly address those anxieties. 

These dollars add three new efforts on top of our earlier funding on caregiving, mental health, care coordination, and navigating systems.  Altogether, Adira is—with patients and caregivers— creating and financing inventive programs for the common good among all people dealing with neurodegenerative diseases.  In reality, that is all of us.”

These projects will run through March 2023.

The three projects

Mark Morris Dance Company (New York City)

“Dance for PD” is an existing program bringing dance therapy to people living with Parkinson’s disease and their caregivers. Based in New York, the program has extensive reach through online and hybrid versions. Through this project, Mark Morris Dance Company will expand services in Spanish and Chinese languages. The project aims to increase physical fitness, improve mood, increase confidence and self-esteem, and reduce anxiety for participants.

Population: People living with Parkinson’s disease and their caregivers located in New York and with virtual participation worldwide.

Focus areas: Thriving again in common pursuits.

University of Pittsburgh, School of Nursing

“Narrative as a Tool to Enhance Diversity in Research on Late Life Neurodegenerative Disorders” will launch a targeted campaign with the narrative accounts of current African American clinical Alzheimer’s and Parkinson’s disease research participants to increase the population’s enrollment. The project aims to highlight the positive aspects of research participation from the participant’s perspective, inspiring others to become similarly engaged. This approach ideally will build trust that may lead to increased interaction with not only research but also related health services and will likely lead to a broader understanding of the diverse needs of people impacted by ND. The project will examine the effects of the narrative campaign on African American Alzheimer’s disease study enrollment over time, as well as allow for the expansion of this work to Parkinson’s disease.

Population: People living with Alzheimer’s disease or Parkinson’s disease.

Focus areas: Simplifying clinical research.

Memory Care Home Solutions (St. Louis, Missouri)

“Dementia Care Navigation: Increasing Health Equity Through Accessibility and Service” will formalize a Dementia Care Navigation program that provides current clients with the level of service needed while building a means to sustainability for future clients. This project is part of MCHS’s flagship program. It is specifically designed to meet the needs of people living at home with memory loss, dementia or Alzheimer’s disease in the Missouri and Illinois areas by connecting them with available support services. This program will provide information on identified programs for assistance, helping with occupational therapy, home modifications, and other needed support. The project seeks to address health inequities that prevent people from receiving needed services as well as to reduce stress for caregivers.

Population: People living with memory loss, dementia, or Alzheimer’s disease in Missouri and Illinois.

Focus areas: Preparing for future threats to livelihood.

Throughout 2022, Adira is focused on developing the priorities for its next round of grants through its most extensive listening effort yet. Visit adirafoundation.org/nd-congress to learn more.