Wednesday, February 20, 2019

Girl Scouts and San Jose Rare Disease Community Team Up For Walk

San Jose, CA is hosting a walk to raise awareness about Rare Diseases on March 2nd at Martin Murphy Middle School from 9AM - 12PM. Everyone can look forward to food trucks, face painting, t-shirts, and fun! Register and learn more about the walk here. The Girl Scouts will be on hand, as well as family representatives, from CCA! The girl behind the walk, is Mikela. On the website she writes why she decided to host this walk:

"My name is Mikela, and I am a Girl Scout of 12 years. I also have VACTERL Association, a rare disease that affects 1.6 out of every 10,000 live births. Through my experience with VACTERL, I've realized that there is not a lot of awareness for a lot of rare diseases. I am currently working on my Gold Award with the Girl Scouts, which is aimed at raising support and awareness for rare diseases (especially VACTERL). My Gold Award includes San Jose's First Annual Walk for Rare Diseases, a website with support and awareness for VACTERL (with other information about other rare diseases), an ambassador program, a patch program for Girl Scouts, and making and donating a good news book to donate to hospitals."

You can find us on Facebook, Instagram, Twitter, and Snapchat as @sjrarediseases."

Mikela hopes to build a website to educate people about VACTERL and other rare diseases. The money raised through registration and donations will support her desire to build a website. The Girl Scouts and the Rare Disease Community hope this walk will be a fixture for interested San Jose-area families.

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