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.

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Meet Misty

    

Misty Oto is a true Huntington's Hero on so many levels!  Locally, she is a long-time Board Member of the San Diego Chapter.  She has been the Chair of the San Diego Team Hope Walk since it's inception three years ago which raises over $40,000 and includes over 300 participants.  Nationally, she is very active with the National Youth Alliance.  You can see her every year at Convention encouraging the NYA kids to participate in the talent show.  She also has worked tirelessly on advocacy demonstrating her support of policy change for those affected by HD.  

On a personal level, her family is affected by Huntington's disease.  Her mother passed away from HD and her sister currently lives with the devastating disease.  Misty tested a number of years ago and since that time she has proved herself even more tireless in her efforts to see an end to this disease!  She serves as a go-to resource for those affected by HD in San Diego, offering endless information about disability, long-term care facilities, clinical trials, support group, and many, many other topics.  She is a true Huntington's Hero!

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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!

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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.  





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