In 2 weeks, on April 19th, Alex will be running in the brand new "Run For It" run in support of The PEI chapter of The Canadian Hemophilia Society.
I communicated earlier with race organizer JoAnn Craig who shared this with me:
Some may have heard of Hemophilia, or VonWillebrands disease, both of which are inherited bleeding disorders and both lack a certain "glue" in the blood that prevents it from clotting.. I will speak of Hemophilia as I am a wife and mother of 2 severe hemophiliacs. My husband is from the days of whole blood treatment when bleeds were left go for days causing excruciating pain, and consequently the deterioration of joint bones. He and many hemophiliacs of his era who are still alive today, suffer from arthritis in these joints and often have mobility problems. My daughter fortunately has better treatment, and gets treated often before a bleeding episode gets out of hand, though she has endured her fair share of troubles. Factor 8 replacement is given twice weekly as a preventative measure, and more often in the event of a bleed. ( Hemophilia mainly affects boys, so she is literally one in a billion.) Hopefully this method will prevent arthritis later in life for her and other young "bleeders"! As the mom and wife of 2 hemophiliacs, I often am at a loss of how to help my own family, much less others in the same situation, so as the PEI chapter president I just thought I'd apply the running I do for my own health to an event to raise money for our chapter, and run for the members that cannot do so due to their health condition.
Saturday, April 19, 2008
Run for It
Distance: varied ... up to 13K
Starting Time: 10:00 a.m.
Registration: 9:00 a.m. at ... TBA
Fund Raiser: PEI Chapter of the Canadian Hemophilia Society
Course Description: Starting at Joe Ghiz Park, Confed. Trail to Lwr. Malpeque Rd, around to Melody Lane, back to Stockman Dr. gives you 13K.
Contact: JoAnn Craig - Pres. - 892-0590, firstname.lastname@example.org