This is Braden Peiffer.  He suffers from a rare neurological disorder called Landau-Kleffner Syndrome. He's been suffering from this disease for eight years now.  I myself have a rare disease, Adrenal Insufficiency (a disease where the adrenal glands are no longer able to produce cortisol.  Cortisol is a hormone that helps fight illness and is essential for living).  I know first hand how difficult  dealing with a disease, let alone a rare one, can be.  Since being diagnosed and successfully treated for my rare disease (2.5 years now!) I've decided that I would run a race every year for another rare disease.  I feel blessed to be well and grateful that I can medicate and live a fairly normal life.   Last year I ran a half marathon for rare diseases and it was so much fun! It's time to pay it forward again and this year I've upped the mileage and I'm running a 50k in Chicago for LKS!!  I'm running with Braden's Aunt/good friend, Darcy Lawler and another friend Amanda Collins.  This is a solo race, no aide stations, no big crowds cheering us on.  I'm hoping that through this race I can raise awareness for LKS and funding.  Kids like Braden deserve the best start in life and rare diseases are underfunded.  I'm hoping you will contribute and help someone like Braden.  I'm asking people donate their money to one of two organizations: NORD https://www.rarediseases.org/about/support/donate/fg_base_view_p3 or Global Genes Project https://globalgenes.org/give/ and donate in honor of Braden Peiffer.  Your donations will help support research, legislation and research for rare diseases.

If you cannot donate money but feeling inspired then please do something great, donate your time volunteering or raising awareness yourself.  That alone can help someone suffering!

On May 11, 2013 I'm running a 50k and I'm going to run my heart out!