Adira’s approach – listen, learn, act.

We are committed to prioritizing the point of view of the people most affected by neurodegenerative diseases: patients, families, and caregivers.  Since our founding, a constant theme of our day-to-day work has been talking to and learning from those who know the impact of these diseases best. In response to our ongoing discussions with people living with neurodegenerative diseases as well as those who advocate and care for them, we are developing an inaugural 2020 grants program that works toward our goals of better outcomes for people and better systems to help them.

The timeline of the 2020 grants program is under review. This spring, Adira Foundation implemented an emergency fast-track COVID-19 response grant program that offered funding to nonprofits whose focus is on people with neurodegenerative diseases and that were ready to quickly and responsibly assist these communities.

Learn more about Adira’s Fast-Track Grants program here. >>

In addition to learning from individuals directly, our priorities are informed by a growing body of data taken from needs assessments and published survey reports.

Our work with organizations like Chronic Care Collaborative and The Lindsay Institute for Innovations on Caregiving has also helped inform the most effective ways to achieve solutions through collaborating and bringing communities together.

For several months, Adira staff traveled through Virginia and nearby states, talking to and conducting a survey with patients and caregivers impacted by Alzheimer’s disease, Huntington’s disease, multiple sclerosis, and Parkinson’s disease to learn what issues were affecting them the most.

That effort is being reworked to find new ways to reach people in light of coronavirus safety guidelines. But we’re already hearing similar themes to others we’ve heard from around the country. We also learn from organizations like I am ALS who have conducted a similar survey and are engaging top health academics at George Washington University to better understand the complex needs of these communities.

Current programs

FAST-TRACK GRANTS

Coming soon

2020 GENERAL GRANTS

Funding Priorities for 2020

Two of the biggest milestones in a chronic disease journey may include the decision to stop working or the transition from living at home to living in a care facility. These decisions are incredibly complex, on top of the extreme emotional impact they can cause.

Legal considerations, financial realities, impossible insurance options, outdated bureaucratic rules, and long physical distances can plague these decisions.

Early planning is vital but seems a lifetime of problems away at the time of diagnosis.

Successful projects will ensure those impacted by neurodegenerative diseases have the resources necessary to plan to stop working, make long-term financial decisions and plan for their long-term health and support service needs.

Time is precious. Patients and caregivers don’t want to spend it floating aimlessly through a vast ocean of information feeling hopeful and then disappointed time and time again as they weed their way through an exhausting list of organizations and services, many unable to offer real help with their needs.

They want faster, easier connections to organizations and professionals who know their disease, have experience dealing with the specific concerns they face, and offer real solutions.

Successful projects will simplify and streamline the process of connecting the best service(s) to each individual.

Being a caregiver for a loved one afflicted with a neurodegenerative disease is undoubtedly one of the roles in the caregiving world which requires the most of caregivers.

The length of caregiving service and eventual total dependence on the caregiver by their loved one is a severely emotional, physical, and mentally taxing process that can never fully be understood by an outsider to the role.

But paired with the love which drives caregivers, education and support are their most important resources. Caregivers not only take on the responsibility of maintaining the well-being of their loved one but must maintain their own well-being amid extreme circumstances.

Successful projects will provide targeted training, education, or support to caregivers. Projects that enhance a caregiver’s ability to maintain the well-being of their loved one or that enhance their ability to maintain their own well-being are both encouraged.

In just a few short weeks we’ve seen and heard enough in our community to know this is an area of great need. We’ve developed an emergency program in response and have fast-tracked the typical process as a result.