Huntington's Heroes

A Huntington's Hero is an individual or Team in the HD community doing extraordinary things for the Team Hope Walk Program!

Heroes do not let Huntington's disease deter them from their goals and objectives. Instead, they rise to the occasion and never back down. We recognize these people as the true Heroes they are, as an inspiration or champion for others in the HD community. Hero stories are published on the HDSA Team Hope website.

Please submit your Huntington's Hero story to provide inspiration to families struggling daily with Huntington's Disease. You can make a difference by inspiring others! Send your stories to  

Thank you for your support in providing help for today, hope for tomorrow.


Meet Dave & Susie

We’re Dave and Susie (no last name.)  Hope drives us for what we do. It’s because of hope we do what we do. Twelve years ago Susie and I, along with some family members and friends, sat down to plan our very first Team Hope Walk.  We decided that the Walk would honor all the families of Illinois that suffered with HD and JHD. Twelve years later, we’re still at it and will continue until our hope is realized: a treatment or cure for HD and JHD.  If we don’t have hope, we’ll never move forward.  It’s what drives us.  Hope gives us direction, drive, determination, strength, courage, a better tomorrow.   It’s our key to the future of an HD free world.  Our Walk maintains that hope for us.  From our first walk, grossing about $19,000, to our 12th Walk this past May, grossing about $93,000, we maintain our hope that our Walks have made a small difference in everyone’s life that suffers with this devastating disease. 

What can hope do for you?  I found this poem that sums up hope:

Hope shines brightest when the hour is darkest. 
Hope motivates when discouragement comes. 
Hope energizes when the body is tired. 
Hope sweetens while bitterness bites. 
Hope sings when all melodies are gone. 
Hope believes when evidence is eliminated. 
Hope listens for answers when no one is talking.
Hope climbs over obstacles when no one is helping. 
Hope endures hardship when no one is caring.
Hope smiles confidently when no one is laughing.
Hope reaches for answers when no one is asking.
Hope presses toward victory when no one is encouraging. 
Hope dares to give when no one is sharing. 
Hope brings the victory when no one is winning. 

By John Maxwell from "Think on These Things"

So for all of our HD and JHD heroes, whose strength and courage show us what hope is, we will continue to walk. 


Meet Joe

Joe (left) and his wife Nora (middle) have supported the Albany NY Fishy Frolic & Team Hope Walk for several years.  Now as a board member of the HDSA Albany, NY Chapter,  Joe has played a huge role in the success of the Team Hope Walk program in the capital region of NY state.   Not only does Joe help the chapter raise over $30,000 per year through the Fishy Frolic & Team Hope Walk program but he also helps the chapter execute their annual Celebration of Hope event in downtown Albany, NY.   Additionally, Joe travels the region and speaks at education events on being a caregiver and how to live life to the fullest in a family with HD.  Joe, Nora, and their entire family are an inspiration to us all!  


Meet Kimberly

Kimberly has been a shining light for our HD families and the Long Island Team Hope Walk for several years. Her dedication to helping all those affected by HD has assisted HDSA raise over $50,000 a year!  With the help of her family Kim puts on one of the largest Team Hope Walks in the region to bring together all those in the area touched by HD.

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