Huntington's Heroes

What is a Huntington's Hero?

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 CJ Redfern, Team Hope Walks Manager at cjredfern@hdsa.org

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

----------------------------------------------------------------------------------------

Meet Sebastian

  

Sebastian Hernandez was your typical 17-year-old. He loved to make jokes, go to the movies and play Nintendo DS!

In March 2012, Sebastian lost his fight with Huntington’s disease at the tender age of 17.

Huntington’s Disease (HD) is a genetically caused brain disorder that causes uncontrollable bodily movements and robs people's ability to walk, talk, eat, and think. An estimated 30,000 Americans have it, and at least 300,000 more are at risk. Children of a parent with HD have a 50-50 chance of inheriting the condition. There is no cure of treatment.

(JHD) is a form of Huntington’s Disease that occurs in individuals under 20 years of age. Sebastian is one of few known cases of JHD in Orange County.

On November 9, Sebastian Hernandez’s family joined the First HDSA Inland Empire Team Hope Walk to walk in honor of Sebastian.

Sebastian’s mother Ruth spoke at the walk and remembered Sebasatian as “the happiest young man you could meet. He was only loved by his family but also his peers and teachers. Sebastian truly inspired others with Juvenile HD to be active to the best of their abilities and to not give up on hope for a treatment or cure.”

She says that his attitude towards life was a true inspiration to her and her family.

----------------------------------------------------------------------------------------

Meet Evelynn


My name is Evelynn Garcia and I am a Member of the Board of Directors for the Arizona Chapter and the Chair of the Tucson Team Hope Walk.  I have a niece and nephew with Juvenile Huntington’s disease, and I am very passionate to work towards a cure for the devastating HD.  Since I found out about my niece and nephew’s diagnosis, I decided I needed to do something. My goal is to be a part of a bigger picture like HDSA to help bring about awareness of JHD/HD, get people involved and hopefully find a cure!  My niece Jasmine just recently turned 14 years old and my nephew Christopher is 12.  Jasmine was diagnosed with JHD at the age of 12 and Christopher at 11.  They are my reason to be a part of the Team Hope Walk.  My goal is to get others in the Tucson community to join our efforts and give support to people like Jasmine and Chris who fight everyday against HD!

---------------------------------------------------------------------------------------

Meet Victor

  

Victor Pisinski has co/led the New Hampshire affiliate Team Hope walk for six years.   He and his wife Althea who has HD, form a walk team each year and personally funds an after party for the walk committee and Team Althea with a hot lunch buffet, drinks, and music, creating a place to rest up, eat up, and to appreciate the success of the day. 

Victor first secured the wonderful venue for the walk at the University of New Hampshire (UNH) where he used to coach the crew team .  With his influence he has gotten an annual commitment from 70 members of the UNH crew team who arrive each year to help all day at the walk. 

Victor's reaches out to his business contacts and friends resulting in seventy percent of the NH walk's sponsors.  In addition his Team Althea raised over $10,000 in pledges in 2012 and was the third highest team in the country that year. Victor takes great pride in the walk and all it has achieved and is thrilled at the wonderful response he gets from those he has reached out to.  





Find A Walk

READ MORE

National Sponsors

 

READ MORE