Skip to content
Huntington's Disease News logo
Newsletter
  • About Huntington's
    What is Huntington’s disease?
    • Juvenile Huntington’s disease
    Diagnosis
    Living with Huntington’s disease
    Symptoms
    Causes
    Stages
    Treatments
    • Approved treatments
    • Experimental treatments
    • Non-drug treatments
  • Community
    Columns
    • A Family Tradition — Carlos Briceño
    • HD in Color – Tanita Allen
    Archived columns
    • Negative to Positives — B.J. Viau
    • A Genetic Lottery – Rebecca Field
    • Always Looking Forward — Alexus Jones
    • Gene Positive — Steven Beatty
    • From Where I Stand — Erin Paterson
  • News
  • Resources
    Advocacy partners
    Navigating Huntington’s disease
    • Videos: Bracing for the long haul
    • Anticipatory grief
    • Talking to children about Huntington’s
    • Huntington’s support groups
    • Huntington’s early diagnosis
    • Huntington’s progression
    • Adaptive devices for Huntington’s
    • Huntington’s genetic testing
    • Chorea and Huntington’s
    • Huntington’s and diet
    • View all

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.

Why sharing our Huntington’s disease stories is crucial

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…

Our family story of Huntington’s is one of resilience

Larry 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,…

Taking back control of my life from the vice grip of Huntington’s

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…

A Huntington’s love story: Finding love in a hopeless place

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;…

How caring for family members led me to Huntington’s advocacy

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…

Huntington’s caregiver goes from burnout to reclaiming her identity

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,…

My grandpa inspired me to write a children’s book about Huntington’s

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…

Empowering others with Huntington’s through storytelling

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…

Travel and Huntington’s disease are parts of our marriage

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…

My family helps me manage the symptoms of Huntington’s

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…

Recent Posts

  • Faulty cellular waste disposal system may drive Huntington’s: Study
  • What the holidays mean when living with Huntington’s disease
  • $12M grant will back first trial of stem cell therapy for Huntington’s
  • A tribute to the kindness of strangers in life with Huntington’s
  • How to support someone who is planning for future care
  • Antipsychotics improve functional capacity, independence in HD
  • Despite dwindling resources, hope endures among researchers
  • The ‘invisible’ symptoms of Huntington’s that people don’t see
  • Genetic variant delays Huntington’s onset by up to 23 years: Study
  • Watching Huntington’s switch roles in our marriage was jarring


  Subscribe to our newsletter

Get regular updates to your inbox.

This field is for validation purposes and should be left unchanged.

Bionews Logo Bionews, Inc.

3 W Garden St
Suite 700
Pensacola, FL 32502
Website: bionews.com
Email: [email protected]
Phone: 1-800-936-1363

  • Huntington's Disease News on Facebook
  • Huntington's Disease News on X
  • Huntington's Disease News on Instagram
  • About Us
    • Our Culture
    • Leadership
    • Careers
    • Contact Us
  • Explore More
    • Advertising Policy
    • Corrections Policy
    • Editorial Policy
    • Privacy Policy
    • Terms of Service
Disclaimer

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2013-2025 All rights reserved.

Log in/Register

[wppb-login register_url="/register" lostpassword_url="/recover-password" ajax=true]

Don't have an account?

Log in

[wppb-login register_url="/register" lostpassword_url="/recover-password" ajax=true]

|

Register

[wppb-register redirect_url="/welcome" ajax=true]

Already have an account?

Register

Create your account by filling in the information below:

[wppb-register redirect_url="/welcome" ajax=true]

By creating an account, you are agreeing to the Privacy Policy and Terms of Service.

Reset Password

[wppb-recover-password ajax=true]