Wednesday, May 23, 2012

Meeting Huntington's disease advocates drives search for a cure

Emily Krull died from Huntington's disease when she was 21
There’s nothing quite like getting out and meeting the people affected by some of the diseases we are working to cure to make you feel both humble and privileged.

Humble, because you appreciate how awful these diseases are and the toll they take on individuals and their families and loved ones, as well as the courage and determination they display every single day in working to overcome these problems.

Privileged, because you feel so fortunate to be part of the effort to find therapies to help treat these diseases.

This past weekend I was fortunate enough to be at the Team Hope Walk, the annual fund and awareness-raising event put on by the Huntington’s Disease Society of America – Orange County chapter, at UC Irvine.

They had probably close to 600 people show up to run, walk, or stroll with their dogs. Many did so in honor of someone they know, and they wore badges with pictures of the loved one, putting a face on this horrible disease. But there was nothing sad or downbeat about the event, instead it was a celebration. A celebration of life, of love, of hope and of the drive to find a cure.

Looking into the eyes of someone who has Huntington’s, or talking to the parents of a child who has died from the juvenile version of the disease, you can’t help but be moved.

It makes the work we do at the stem cell agency much more personal. It’s not about abstract ideas or concepts; it’s about people. People like Emily Krull.

Emily, who had Juvenile Huntington’s, died when she was just 21, but her spirit lives on in her parents, Ted and Carla, who helped organize the Team Hope Walk. Carla says Emily is with them in everything they do, and it’s her spirit who helps keep them going.

And it’s their spirit, and stories like theirs, that help keep us going.

This page has a list of California's stem cell agency grants focused on Huntington's disease. Watch our video to learn more about one stem cell approach to treating the disease.



K.M.

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