Thanks for taking the time to visit my JustGiving page.

I plan to complete the Outlaw Half, a triathlon that consists of a 1.2 miles swim, a 56 mile bike ride and then finishes with a half marathon.   I'm doing this to raise money for Annabelle's Challenge, a charity that raises funds for research and awareness of vascular EDS  

I expect most of you visiting this page have never heard of vascular EDS. I hadn't until around 18 months ago when one of my close friends was diagnosed with it. 

Vascular EDS is a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Patients are at risk of sudden arterial or organ rupture. Vascular EDS (previously known as EDS Type IV) is a rare type of Ehlers-Danlos syndrome caused by an alteration, also known as a mutation in the COL3A1 gene. 

My friend, Dave, has one child, a daughter named Evie.  It wasn't long after Dave's diagnosis that he and his wife Dawn were given the devastating news that Evie also had the condition.

There is currently no cure and very little treatment available for vascular EDS. The only treatment is to try and prevent further or accelerating damage by limiting physical exertion.  For Evie in particular, a little girl of 8, this is a huge change in lifestyle that will need to continue for the rest of her life.

Vascular EDS is a devasting disease. The stats do not make pleasant reading and as the condition is very rare, the level of funding for research and raising awareness is very low. Annabelle's Challenge is the leading charity for the condition. As you may have guessed from the name of the charity, there is a specific story behind it which I urge you to have a read if you have the time.  The website address is www.annabelleschallenge.org.  

Thank you in advance for your donation, please give all you can.  You can be assured that all the money will go to a great cause and that I will be in a lot of pain for a long time in the training and then the event itself.  I don't mind which one of these two reasons makes you donate, I'm just grateful you have.  

Thanks

Chris

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.