y name is Mikela St. John, 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, 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.
The walk is on March 2 at Martin Murphy Middle School in San Jose, CA from 9 AM – 12 PM. There will be face painting, food trucks, and exhibitors. The registration fee is $15, which includes a free t-shirt. You can register at tinyurl.com/sjrarediseases until February 10th.
You can find us on Facebook, Instagram, Twitter, and Snapchat as @sjrarediseases
For more information, please contact [email protected]