On a mild, foggy October morning, a small but determined group of people met at a public elementary school in Freeport, Maine. Everyone there had had their lives touched by the dreadful genetic disease known as Huntington’s. Huntington’s disease is a genetically determined neurodegenerative disorder that results in uncontrolled movements and, eventually, in cognitive decline and death.
This was the annual “Team Hope” walk for the Huntington’s Disease Society of America (HDSA), Maine Affiliate. Across the country, Team Hope Walks are held throughout the year with the goal of raising as much money possible in the local community to support the mission and services of the HDSA.
My husband and I were newcomers. Reaching out to family members of those with the disease, or those who carry the genetic determinant that eventually leads to the disease, was not something I was used to. Growing up, the topic was not usually discussed, despite the fact that the disease runs in my family. The idea of meeting other families affected by the disease was never broached. This was probably the result of an equal mix of three contributing factors: 1) the sad history of the disease in our family, 2) a complete lack of any treatment options (at the time), and 3) the fact that my dad’s side of the family, where the disease was manifest, was not very “touchy-feely.”
As we joined the group, I was anxious to meet up with our primary contact, Nancy Patterson, the coordinator of the walk. We had met Nancy last spring at a HDSA meeting. Most of the walk was spent chatting with and getting to know one other. Nancy’s small physical stature concealed an impressive reserve of energy and resilience. Hearing about her story and about how her family coped with Huntington’s and other major diseases was both heartbreaking and inspiring. From my own perspective, the combination of heartbreak and inspiration is likely not uncommon among surviving family members who have witnessed the entire trajectory of the disease.
However, the days when we watch the decline and death of loved ones carrying the mutation may be coming to an end. The promise of new therapies is one of the reasons I switched career trajectories — from atmospheric science to the study of aging. I wanted to join other researchers in realizing the promise offered by the ability to tease out hardwired genetic programs that, when evoked, improve our resistance to age-related disease, including Huntington’s. My research at the MDI Biological Laboratory’s Kathryn W. Davis Center for Regenerative Biology and Medicine is focused on identifying the genetic determinants of aging and age-related degenerative diseases.
The progress that is being made in research on Huntington’s is remarkable. Recently, human clinical trials began for a new pharmaceutical therapy that shows promise for directly targeting and effectively “silencing” the offending genetic mutation responsible for this disease. Very soon, positive genetic tests for this mutation may no longer be a death sentence. As if in support of this new promise, the sun began to peak out from the fog and low cloud deck as we finished the walk.
Fundraising continues until the end of the year. The walk in Freeport raised several thousand dollars, which will go the the HDSA national headquarters, where it will be used to improve the lives of those living with the disease and in search of a cure.
If you’d like a chance to give, it’s never too late.
Learn more about Huntington’s disease or donate to the Huntington’s Disease Society of America by visiting HDSA Maine Affiliate’s website.