Erik

The marathon tradition of giving continues!  Erik is our newest special friend to give back to the Special Friends Foundation through marathon running!  However, Erik is adding a new twist, he is running for 24 hours for possibly more than a 100 hundred miles!  Wow!  Not even sure I can comprehend that type of endurance!  Please considering donating to this incredible feat!

http://www.firstgiving.com/fundraiser/erikheine/24thehardway

24 The Hard Way 

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.

Link to 24 The Hard Way: http://24thehardway.com/

 

 

Michael Ellis

The Special Friends Foundation is honored to once again be named as the foundation that Michael Ellis supports by running the Milwaukee's Lakefront Marathon.  Michael Ellis and his training buddies, Terri, Cate and Addie are truly a team that shows what Special Friends are all about.  Special Friends are sometimes the givers and sometimes the receivers, but most importantly they are always there for you.

www.firstgiving.com/26forRTS

 

Marathon for RTS and Special Friends

10 years ago my family was blessed with the addition of a little ball of fire we named Addison. From day one is was clear that life with Addie would be a roller coaster ride and that we’d be introduced to many new experiences along the way. One of those was Rubinstein-Taybi Syndrome which she was diagnosed with at about 2 ½ years old.

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. Very shortly after receiving Addie’s diagnosis, we were introduced to the Special Friends Foundation which was critical in helping us gather information, resources and more importantly connecting us with others who were already travelling the path we were embarking on to get some ideas about what may lay ahead.

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. They also offer 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.

This October, I’ll again be joining a few thousand folks in taking on Milwaukee’s Lakefront Marathon and for a bit of added incentive I’m extremely proud to again represent SFF and do my little part to give back to an organization that has given RTS families so very much.

Once again, the William S. Jones Foundation has graciously offered to match the first $2000 raised and we look forward to hopefully taking full advantage of their generosity again this year. Special thanks to Tom Landers and everyone at the Foundation for thinking of us and for your continued support of the SFF.

Heartfelt thanks go out to everyone for their involvement and support over the years - through donations, spreading the word, helping me train, being at the finish line, or just offering encouragement along the way. I'm humbled and extremely grateful.

Thank you for taking the time to visit the site and for considering helping out the Special Friends Foundation. Please feel free to pass the information along to anyone you feel might be interested.

To learn more about RTS, click here.
For more info on the Special Friends Foundation, click here.
For a peek into our day-to-day life with Addie via Terri’s blog, click here.