Tuesday, February 6, 2018

Team #Boston4Rett

If you've been around my neck of the InterWebs for a while, you probably have seen that I've been lucky enough to have been a part of #TeamSparkle's #Ragnar4Rett adventures the last three years. In case you are new to these parts (if that's the case - WELCOME - thanks so much for stopping by!), let me run through a brief recap.

Our pre-race "jumping" picture from 2016... Let's just say I don't know how to jump on "3"...

The ladies of Sparkle Athletic were introduced to Rett Syndrome by a friend, Allison, because her daughter suffers with this terrible and debilitating neurological disorder. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein.

Source@afoley09's Instagram feed

Girls are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Many lose their ability speak, walk or use their hands, and depend on their families for every part of their day. Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought. Amidst the mass confusion in their central nervous systems, they're smart, strong and waiting bravely for a cure.


Well, when the amazing women of Sparkle Athletic heard about Rett and the struggles that these girls (and their families) face day in and day out, they tried to come up with an idea on how to help. So they put on their brainstorming caps visors and decided they should do something that they knew a lot about - RUN! Run to raise money and awareness. Run on behalf of these girls and their families. Run for these girls, until one day, hopefully, they can run WITH these girls. 

For the past four years these ladies have created a team to run the SoCal Ragnar Relay as a way to raise money and awareness. It is a HUGE fundraising effort and over the past five years they have helped to raise over $160,000.

Today, there is no cure, but Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside. Not only will the work help thousands of girls and women worldwide, but the findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders. In essence, Rett girls may hold the key to a cure for millions of people suffering from dozens of disabilities.

But this year we are mixing it up a bit... five of the six of us repeat runners qualified for and will be heading to Boston for the Boston Marathon in mid-April. With SoCal Ragnar Relay on April 6th and 7th and the Boston Marathon on April 16th, we knew we wouldn't be able to do both... But we also didn't want to leave Girl Power 2 Cure without the much needed funds... So a plan was hatched - Team #Boston4Ragnar! Although a team of six won't be running 200ish miles across SoCal, a team of seven will be tackling the the world's oldest annual marathon and one of the best-known road races.

The seven of us may not all run the race together, but as a team we will each run the race on behalf of 27 girls with Rett.

In the coming days/weeks/months there will be plenty of ways to GIVE, but for now I just wanted to let you all in on the secret I've been keeping for a while now on how Boston will be even more amazing than originally expected. {PS Unlike Boston charity runners, we are not required to do any fundraising - we all qualified for the race based on a prior marathon finish time. But, even still, I would love it if you would consider potentially donating to this cause! Every dollar counts!}

Have you heard of Rett Syndrome before?

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