As many of you know, Huntington's Disease, a genetic, degenerative brain disorder, runs in my family. The disease is most easily described as combining the symptoms of Parkinsons, ALS, and Altzheimers, a devastating mix that has taken too many members of my family. In 2016, my youngest cousin Meaghan, passed away at just 15 years old, after a courageous battle with Juvenille Huntington's Disease, a more aggressive form of the adult version. Less than three months later, her father, my Uncle John, lost his own battle with Huntington's. His wife and eldest daughter bore more grief than anyone should ever have to as a result of this devastating disease, and our family suffers a deep hole in it for the losses of these two amazing individuals.
Having seen the devastating affects of the disease first hand, I am deeply committed to supporting HDSA in raising awareness, and securing funds for vital services for individuals and families affected by the disease, physician education, clinical trials and scientific research.
I am in the fourth known generation affected by HD in my family. The odds of having the disease are 50/50 if your parent has a mutation of the Huntington Gene (which we all carry.) I spent most of my life watching every twitch in fear that I was showing signs of the disease. Thirteen years ago I got the news that my father has been brave enough to be tested for the disease, and that since he is negative, I too have been spared. Of course I feel blessed to have my life run its course without this devastating disease, but diseases like HD affect more than just the person diagnosed-- it affects our entire family--and each of us is living at risk, suffering from the disease, or supporting someone living with HD.
Our family continues to be tried by Huntington's, with many of us still at risk, and more being diagnosed year after year.
So I'm walking this year in memory of our family's great losses, and in hope for the future. I walk to raise money not only for the cure, but for the vital resources to families and caretakers that the HDSA funds.
I’m walking for my fifteen year old cousin whose mother had to battle the health care system to get her the care she needed. I'm walking for the days my family paced, waiting to hear if Meaghan would wake up from her coma. I'm walking for her father, the youngest in my father’s family of 6, who hadn't walked in over 10 years, spending his days in a wheelchair in a long term care facility in Massachusetts before he passed. I'm walking in honor of the bravery of my Aunt, and her eldest daughter who continue to raise awareness for HD in memory of their father/ husband, sister/daughter.
I am walking in memory of my Pop-pop, who HD took before I could know him, and for the extended families of his brothers and sisters whose side of the family has been disproportionately ravaged by the disease.
I walk for my cousins, my second cousins, all the Cancelmos that continually face this challenge with more positivity and grace than I could ever imagine.
And I'm walking for those struggling with the choice to be tested, a bravery I'm not sure I could have mustered, but am eternally grateful to my father for being able to do.
My family and I are dedicated to helping the HDSA in raising these critical funds that support services to individuals and families, because we know first hand the emotional struggles of this disease. We are also dedicated to raising funds to support the research necessary to find a cure, because we have not given up hope.
I hope you'll join me in raising funds for HDSA, and if you're available- come to the walk! It's a beautiful day on Crissy Field
Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support -- and feel free to forward this to anyone who you think might want to donate too!