People's real, lived experiences shape our work
We want to hear as many as possible, and need your help to reach them. The voices of people impacted by neurodegenerative diseases collectively set our priorities for funding ideas that will improve day-to-day living.
Voices like Paul Martin, who has suspected Parkinson's and is the sole caregiver for his wife, Linda, who has Alzheimer's. He shared some of his story with Adira because he wants to be a factor for positive change. He reported a few needs he has experienced or observed in the community, including this one:
What I need, is a benevolent hand on my and each caregiver’s shoulder to turn us towards the services that really help us and away from the resources that attract our attention, but never fulfill any of our needs while demanding our limited resources of time and effort.
And voices like Cinzia, who has multiple sclerosis and recently recorded memories and reflections together through our StoryCorps project. In the conversation, Cinzia shared why she has become such a fierce advocate for MS awareness:
I remember going to a neurologist to assess the damage to my spinal cord at that time and I remember him looking at me and saying: You’re lucky you’re walking. and just being so in shock. I had just gotten married. I was 25 years old. What do you mean I’m lucky to be walking? It was terrifying.
This need—help with care coordination—was one of three named most often through our collective listening last year and as a result became a focus area for our Pervasive Needs Grants. Now, three Adira-funded projects are working on building thoughtful and holistic navigation or coordination programs for people with NDs.
Your contribution to Adira is an investment in bettering the lives of people most impacted by neurodegenerative diseases—starting by reaching them and hearing from them. While many funding dollars go to research for desperately needed cures, Adira is focused on services and solutions that will improve life in the meantime.
We are so grateful for your commitment to people with Alzheimer’s and other dementias, ALS, Huntington’s, MS and Parkinson’s! Make a donation today to inform and support the services people need right now.