My name is Erik, and I'm a college professor. My wife and I had our son, Stephen, in December of 2006. Over the course of the next 18 months, we saw that he was behind in some of his milestones, and he had some physical complications requiring surgery. In May of 2008, we were given a diagnosis of Rubinstein-Taybi Syndrome (RTS). I'm borrowing this next passage from Michael Ellis, another RTS parent, because he states it so eloquently:
"RTS is a relatively uncommon genetic condition that impacts individuals physically, medically and cognitively to varying degrees. Because it is rare, difficult to diagnose and the community relatively small, access to information about RTS can be challenging to come by.
The Special Friends Foundation (SFF) helps underwrite RTS family reunions that happen in varied hubs across the US. It’s at these reunions that families affected by RTS gather to laugh, cry, and share the experiences that help each other on the journey and offer each other the tools they need to provide an enriching and loving environment for their children. SFF also offers families financial assistance for medical and therapeutic needs incurred because of RTS that may not be covered by other insurance or medical assistance programs, such as communication devices and other assistive technology, adaptive bikes, sign language education, and other things that enable kids and their families to participate fully in the opportunities life has to offer."
We have been the beneficiary of a donation from SFF in the way of an adaptive tricycle for Stephen. He has challenges, many of them physical and communicative, but he loves to play as best as he can. He particularly likes running, but can only run for about 10 meters before he has to start walking again, and that is what leads me to the "why" of this challenge.
I will be on a sabbatical during the Fall 2014 semester and writing a book. But because I won't be teaching classes, my schedule will allow for some flexibility, so I'll have extra opportunities to train. I am a runner, and Stephen loves to come to his dad's races and see all the people running. Because he cannot run for extended periods of time, I will. So, I will be running a 24-hour race, 24 The Hard Way, in our hometown of Oklahoma City in late October; it's a race that occurs on a 0.97 mile loop! Why not just a marathon, you might ask? It's easy: I want to do something truly inspiring and raise some significant money for SFF, a group of people who do so much for families across the country.
I have no idea what will happen to me during this race, as a marathon is the farthest that I've even run. I imagine that I'll be overwhelmed with emotions once or twice (or more), and I know that I'll be tired, but I'll be running for Stephen, and all RTS families, so I promise that I'll do my best to keep going. I have a mileage goal, but since I've never tried anything like this, I have to keep expectations low.
I'm not sure how to do pledges-per-mile - possibly through the comments without making a donation? It's something I'll look in to trying to add to the page. I hope that undertaking this race will inspire you to donate to the Special Friends Foundation. Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts. Feel free to share this page with anyone who might be interested in contributing to SFF.
UPDATE 1 (8/15/14): I have been informed that an anonymous donor will match every donation, dollar for dollar, up to $10,000. This is a chance to double your donation! What wonderful news, and what a truly generous offer. We can help twice as many families!
UPDATE 2 (9/19/14): Per mile pledges cannot be done. However, if you're interested in a per-mile donation, you can wait until after the race to donate. The donations will stay open for two months after the date of the race.
UPDATE 3 (10/13/14): Only 12 days until the big race. I did a long run on October 12 - 26.5 miles in about 3 hours and 54 minutes. I learned a lot during this run, and hope to be at my best for the 25th. Please convince all your friends to contribute. I would love to raise over $10,000 before the match. So many families and children could be helped. I'll do my best to inspire some donations, and all of your support has and will continue to inspire me.
UPDATE 4 (10/28/14): I completed the 24 The Hard Way race on October 26. I ran 85 miles, despite suffering a minor knee problem that prohibited me from running the last 8+ hours of the race. I finished first in my age group (M 30-39), and 9th overall. Here's a link to the results: http://www.onlineraceresults.com/race/view_plain_text.php?race_id=44448
Official results: 85.09 miles. http://ultrasignup.com/results_event.aspx?did=26964
UPDATE 5 (12/22/14): Final Update - with 3 days to go, we've raised $9790, almost maxing out the match. I crossed the 2000 mile barrier for the year yesterday with an almost 20km run. I achieved all of my 2014 running goals, and if we can get another $210, this fundraiser will have surpassed my dreams.
Link to RTS information: http://rubinstein-taybi.com/
Link to Special Friends Foundation: http://specialfriends.org/
Link to 24 The Hard Way: http://friendsofmultisport.com/event/24-the-hard-way/overview