Throughout May, Huntington’s Disease News is recognizing Huntington’s Disease Awareness Month through a variety of stories representing different perspectives on life with Huntington’s. These stories highlight some of the unique challenges of living with Huntington’s, as well as stories of hope, inspiration, and other topics that help to generate awareness among the Huntington’s community. Follow along with the series here or visit us on Facebook, Instagram, or X, using the hashtag #HDSpotlight.
Christy Dearien discovered her father and grandfather had Huntington’s disease after her brother was finally diagnosed. (Photos courtesy of Christy Dearien) This is Christy Dearien’s story: I knew nothing about Huntington’s disease when my brother was diagnosed with it in 2014. But his diagnosis explained everything about my…
Read moreLarry Boyd is an advocate for people with Huntington’s disease. (Courtesy of Larry Boyd) This is Larry Boyd’s story: It all began in the mid-1960s when I entered high school. My mother was taken to a University of Colorado hospital for what was initially diagnosed as a nervous breakdown,…
Erik Barrett runs his first marathon on the highways of Manitoba, Canada, in 2020. (Photos courtesy of Erik Barrett) This is Erik Barrett’s story: I wear many hats, whether it’s being a caring family member, a cheerleader to my friends, or an ultramarathon-running Huntington’s disease advocate. It’s easy…
From left, Erika and Melissa Boulavsky celebrate on their wedding day. (Photos courtesy of Melissa Boulavsky) This is Melissa and Erika Boulavsky’s story: Both of our stories begin with and continue to be shaped by the Huntington’s disease (HD) community. We both come from families affected by Huntington’s;…
From left, family members Fernando Torres, Ana María Torres, and Rafael Torres take a Sunday stroll. (Photos courtesy of Ana María Torres) This is Ana María Torres’ story: My first memories of Huntington’s disease come from my uncle Mau, my dad’s brother. He was often irritable, spoke…
Hannah Remillard, right, with her mom, Terresca “Mama T” Remillard. Hannah became her mother’s caregiver at the age of 14. (Photos courtesy of Hannah Remillard) This is Hannah Remillard’s story: A typical 14 year old would just be starting to find their own identity and individuality. But for me,…
Emma Wajswasser, center, displays her book alongside her parents, Erin Paterson and Daniel Wajswasser. (Courtesy of Erin Paterson) This is Emma Wajswasser’s story: Ever since I was young, I was aware that my grandpa had Huntington’s disease. My parents always took opportunities to teach me about his…
Erin Paterson holds copies of her books. (Photo courtesy of Erin Paterson) This is Erin Paterson’s story: I attended a conference for families impacted by Huntington’s disease (HD) — a spectacular event with expert panels and motivational speeches. But it’s the hugs and the feeling of being loved…
Stu Hopper, left, and Carlos Contreas take a photo in Tenerife, one of the Canary Islands, on a cruise stop by the Royal Caribbean’s Explorer of the Seas. (Photos courtesy of Stu Hopper) This is Stu Hopper’s story: Carlos Contreas and I, Stu Hopper, met…
Kerry Agee smiles with her husband, Cody Agee. (Photos courtesy of Kerry Agee) This is Kerry Agee’s story: Hello! It’s a pleasure to meet you. I’m Kerry, 44, wife of a Gen-Xer, mother to a teen, and lover of dance, travel, “Lord of the Rings,” and Hello Kitty, as…
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