Today is Rare Disease Day, so it's actually very fitting for me to post about this virtual run.
My friend and running partner, Amanda, has a friend whose daughter, Olivia, is suffering from Batten's Disease, a very rare neurodegenerative disorder that affects children. Over time, it can affect their mental impairment and progressive loss of sight and motor skills. They often suffer from seizures, and eventually, become blind, bedridden, and unable to communicate. As of now, there is no known cure for Batten Disease and the outcome is fatal.
Amanda wanted to do something to help her dear friend and Olivia out, so she decided to host a virtual run called "Running Over Batten's". You can do the run at any point in April, and you get to choose the distance. The cost is $20 and you will receive a medal.
Want to know where your money will go? It could help Olivia and her family out with a variety of different needs -
Check out the Running Over Battens Facebook Page for more information and updates on the virtual run.. The deadline is April 30th, and you can also email Amanda directly at firstname.lastname@example.org.
If you'd like to learn more about Batten's Disease, visit http://www.bdsra.org/.
Until next time,