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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

Spina Bifida Genetics Research Project

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Spina Bifida Heroes

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Why we do this.

 

Every once in a while, one is reminded about the importance of the work that we contribute to by supporting biomedical research.  Sometimes even those of us who work in the industry are unaware of all the people who demonstrate enormous amounts of courage that are hard to imagine.

 

As part of the SB Genetics Research Project, I get to spend a fair amount of time at Spina Bifida events – to raise money and awareness, to build community and to enjoy each other’s company at the holidays.  Our research project is being actively supported by more than 30 Spina Bifida advocacy groups around the world and 22 hospitals with Spina Bifida treatment centers.  Our participants represent 47 states and 11 countries.  Nearly all of that support comes from volunteers and professionals whose only goal is to help reduce the incidence of Spina Bifida for future generations.

 

This past week-end, I was fortunate enough to attend the inaugural WinterBifida Fest, sponsored by the Spina Bifida Association of San Diego.  It was extraordinary to be a part of this event and to meet a true hero – Aaron “Wheelz” Fotheringham, an extreme wheelchair athlete who landed the first wheelchair back flip.  Aaron has something to teach everyone, not just people in wheelchairs, about strength, conviction and never giving up.  His message of hope and perseverance in the face of adversity resonates with everyone who has a heart. 

 

Please  take a minute to watch the video from the NBC affiliate in San Diego.

 

We are proud and humbled to be associated with this vibrant, compassionate community.  It sustains and motivates us. 

 

--Bruce

www.sbgenetics.org

support@sbgenetics.org

 

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