When I was asked to be on Adira’s board of directors at its inception in 2019, the idea of starting out fresh with a brand-new nonprofit foundation was enticing and challenging at the same time. The name Adira means “strong, noble and powerful,” and that is exactly how I view the Adira Foundation. Its mission is to invest in better lives for people with the five neurodegenerative diseases that we serve. The board of directors is comprised of people with many strengths in the areas of medicine, nonprofits, caregiving, education and advocacy, to name a few. Our mission is noble and through our diverse strengths, as a team, we can be powerful.

Cheryl, Kevin and their grandchildren, Teagan and Kyle stand together for Christmas 2019.

My strength and power lie in my 30 years of being a caregiver, advocate and educator for my first husband and younger daughter, both of whom had Huntington’s disease (HD). I was lucky to be a registered nurse (RN), as it helped me navigate the healthcare systems that I needed to help John and Meghan. But even being an RN, there was so much more that I needed to know and learn about the medical, legal and social systems to provide my family with the best resources and care that I could. Most of the time I was doing this alone, and I felt a lot of frustration and uncertainty charting this unknown territory. Over time, I came to learn much and was able to share my experiences and knowledge with other families dealing with Huntington’s disease as well. However, this was a two-way street. As much as I could help other families, they at the same time were helping me with their knowledge and experiences as well. All of us were benefiting from one another.

We all know that there is power in numbers, and often during my 30 years of advocacy and education, I knew that other neurological disease would be addressing the same worries and concerns that the HD community was. It seemed that there should be able to be a more streamlined ability to help people with common ground in these neurological diseases. It also seemed that there should be a place that caregivers, patients and families could go so that they didn’t have to duplicate everything or do this alone. Fighting for better healthcare, benefits, knowledge, etc., is easier when done with more people with these shared experiences. It gives us the power necessary to adapt and change the course of our loved one’s lives for the better.

Cheryl Sullivan Staveley and her granddaughter
Cheryl attends her granddaughter Teagan’s Irish step competition in 2019.

Having known Greg Smiley for about 10 years, when he explained his vision of Adira Foundation, I knew immediately that this was something that could be lifechanging for the patients, families and caregivers of HD, Parkinson’s, MS, ALS, and Alzheimer’s. It seemed this was an answer to a question that I had been thinking about for all of these years. It was a solution in knowing that people don’t have to fight all by themselves in their battles with their particular neurological disease. I eagerly “jumped on board.” It was a no-brainer to be part of a new and exciting organization that would help more people in a streamlined fashion … addressing their individual concerns.

Being on Adira’s board has given me hope for collaboration and cooperation. It has validated that working together as one we can accomplish more and bring more hope to patients, families and caregivers. As we are a new board, I am still finding my way in how I personally can best serve Adira Foundation and the families that we help. It is an honor and privilege to serve on the board and I look forward to learning, growing and accomplishing much with each new year.

Adira is honored to have Cheryl Sullivan Staveley as a founding member of its board. She’s been a patient advocate and leader for 30 years. (Read more about her work as an advisor here.) In fact, her family’s experience with HD helped inform the novel by neuroscientist Lisa Genova, Inside the O’Briens.