Run, Steph, Run! Blog, Steph, Blog!
Hi Guys,
I started another Tumblr! This time, I’m blogging about all the things running related, particularly as a way to keep myself accountable. Why do I need extra accountability? Well, that’s because I decided to sign up for the Twin Cities Marathon on Saturday, October 2nd (a day before I turn 29 years old!). I always told myself that I wanted to try running a marathon before I turn 30, and this is the last fall that I know I’ll be in the Twin Cities for certain before that milestone. Even though I’ve run two half-marathons, a 10-mile race, and lots of of miles in between, I’m pretty nervous about training for and running a marathon and have already faced some challenges mentally and physically in my first month of training.
I also want to stay in touch with friends and family because I’m going to use this personal challenge as a way to raise awareness of Rett Syndrome and fundraise for the International Rett Syndrome Foundation. My goddaugther, Melaina, was recently diagnosed with Rett Syndrome, which is a neurological disorder that results in stagnation of or regression in development.
Beautiful Melaina with her beautiful mama!
Here is a short description of the diagnosis from the IRSF and a description of how the IRSF makes use of donations:
Rett syndrome is an X-linked neurological disorder, and 1 of only 4 diseases that occurs almost exclusively in girls. And although it is genetic, it is not hereditary, so parents have no idea their infant has this syndrome until between 6-18 months of age, when she unexplainably plateaus in development or suffers a devastating regression, leading to severe lifelong motor apraxia affecting speech, hand use, mobility and even the ability to eat or breathe easily for the rest of her long life. A child is born with Rett syndrome approximately every 2 hours.
The work of the IRSF is to accelerate current groundbreaking research that is making experts believe that Rett syndrome may be the first neurologic disorder to be reversed at any age, and may be the Rosetta Stone to fighting monumental diseases like Alzheimer’s, Parkinson’s, autism, and more. And while IRSF funds research grants and important research symposia to bring this Research to Reality, we also provide critical support and information to the families supporting their daughters with Rett syndrome every day. Most of the research funding and family support provided by the foundation comes from fundraisers large and small held by parents and friends.
Melaina’s parents and I are looking into how to best approach the fundraising process, so stay tuned. I would like to ask for supporters to pledge a donation of $1 per mile of the marathon (26.3) or whatever you can afford! If you have any experience with fundraising of this sort or know of matching funds programs for charity donations, let me know!
I’m looking forward to using this blog to talk through the marathon training process, share information, and connect with others. I hope you join me on the journey! Don’t forget to Follow/RSS/bookmark! :) Thanks!
Regards,
Steph
