Better Than the Alternative Tuesdays: Special Edition

Back when I was raising money for my first (and certainly not last) half marathon with Team Challenge, you guys really came through for me and raised a lot of money through my Kick Ass 5K. 

So today’s post is abandoning traditional BTAT format (but certainly not the principle) to bring you the story of my friend Lauren and how running for the occasional 5-miler turned into running marathons for Owen and all the other children with Spinal Muscular Atrophy (SMA), also known as “Baby Lou Gehrig’s Disease”.

owen2

I hope to see all of you out in Central Park on Thursday night at 6pm **stop by before Runner’s Happy Hour** to show your support.

And now, meet Lauren.

Lauren running for SMA at this year's Boston Marathon.

Lauren running for SMA at this year’s Boston Marathon.

1. How did you get involved with raising money and awareness about SMA?

Up until May 2008, S, M and A were three letters in the alphabet as far as I was concerned. On May 5th, one of my best friends, Dorothy sent me a text letting me know that Owen, her beautiful 2 month old baby boy was diagnosed with SMA and that its not good. Quickly, I googled SMA. The first thing that came up was SMA-America, a technology company and then a medical company and then a few results down I read “Spinal Muscular Atrophy”, quickly learning what SMA meant for Owen.

I decided in July that I would run the Dublin Marathon to raise money for the medical expenses Dorothy and John would be faced with but unfortunately Owen lost his courageous fight against SMA on August 16, 2008.

My run became a run in Owen’s memory and the money raised was donated to Columbia’s SMA Clinic, Owen had spent the last month of his life at Columbia.

Little Owen.

Little Owen.

2. What is SMA?

SMA stands for Spinal Muscular Atrophy. It is the #1 genetic killer in infants and young children. There is no treatment and no cure. SMA is degenerative and eventually hinders the ability to walk, stand, eat speak, breathe and swallow. It does NOT impact the mind. The average life expectancy is 2 years old.

SMA infographic

3. How did you get involved in the Gwendolyn Strong Foundation (GSF)?

During this time (at Columbia, during Owen’s final days) I met the Strong Family. Bill and Victoria live in California and started a blog documenting their daughter Gwendolyn’s journey with SMA. I found comfort in their posts and just fell in love with them right away. We quickly became friends…great friends. They started a foundation in Gwendolyn’s name and help families all over the world who are affected by SMA.

The GSF mission is to increase awareness and accelerated research focused on ending this cruel disease and support families impacted by SMA. Their foundation is run by Bill and Victoria, which means 100% of donations GSF receives goes towards fulfilling their mission. No parent should be told “your child has SMA, there is no treatment, no cure….take your child home and just love them.” The reality is that 1 in 40 people who will read your blog are carriers!

Lauren and Gwen, just two girls hanging out.

Lauren and Gwen, just two girls hanging out.

4. Tell us a little about Gwendolyn.

Gwendolyn will be turning 6 years old in October…that is triple the life expectancy of children diagnosed with SMA! She will start 1st grade in a few weeks which is so exciting. She will also run her second half marathon in November which I am really excited to be there for again. Gwendolyn loves the thrill of running and crossing the finish line…and really, really loves the medal at then end. Bill will push Gwendolyn in her stroller all 13.1 miles to provide Gwendolyn with this experience.

5. How did you get started with running?

I started running in college to work off those last call beers and 4am diner feasts and decided to run the Boston Half Marathon in 2002 just for kicks and because Boston is a cool city. At the shock of both myself and my parents I finished in under 2 hours. In 2004, I signed up for the Chicago Marathon. I ran maybe 5 miles leading up to it but I finished in 4:27 and told my parents at the finish “never f’ing again” and I crawled my way back to the hotel. A year later I was signed up for the Philly marathon and its been a non-stop love affair since then!

6. How have you incorporated your newfound love of running with raising money and awareness for SMA through the Gwendolyn Strong Foundation?

It was marathon 11 for me and my 2nd attempt at qualifying (for Boston). My best time was 3:50 and I needed 3:35. Everything seemed to be aligned at this race. It was in California, my favorite place. I was staying with Bill, Victoria and Gwendolyn (Strong) and they would be out on the course to cheer me on.

Not only was qualifying for something I did not think I could do, my favorite part was seeing Gwendolyn on the course and at the finish line cheering me on. It made the moment that much more important and meaningful. I ran that race with the help of my friends in 3:24:24!

Qualified!

Qualified! Lauren, the Strong Family, and Team Never Give Up.

7. What do you love about being a part of the GSF’s team Never Give Up?

Bill and Victoria came up with the NEVER GIVE UP motto for their foundation about two years from when GSF officially became a non-profit organization.  It reflects where they have been and where they are going. They realized Children with SMA Never Give Up and that they (GSF) would never give up either. I love it!

I have to say that ever since they gave me my first NEVER GIVE UP race jersey, every race I run wearing it I can hear spectators shouting NEVER GIVE UP as I run past. It is a great conversation starter in the corrals and allows me to inform perfect strangers about SMA while we wait for the gun to go off at the start.

8. When is your charity run and how can runners and walkers take part?

The Never Give Up SMA Awareness Run/Walk in Central Park is a way to spread awareness in a place that brings me peace when I run, has been the home of many PR’s in my running, and brings runners of all kinds together. Central Park is a place where walkers, casual runners, mommies and/or daddies with strollers, and elite runners run. The run/walk is also meant to celebrate and honor Owen on the day before his 5th angel anniversary.

{Run details: Thursday, August 15 at 6pm, Tavern on the Green in Central Park}

 

You actually inspired me to start this after all that you did for the Boston Strong run. I realized when a bunch of people come together regardless if it is an official organized event that a message can be sent and people do listen. If having only 10-20 people wearing Never Give Up gear in Central Park promotes one walker/runner passing by to look up Never Give Up and GSF, it is 1 more person educated about this rare and terrible disease!

People can still help even if they cannot make the event in many ways, simply becoming informed about SMA is support in itself. They can visit and buy some fabulous NEVER GIVE UP gear or they can visit my fundraising page and make a donation to the GSF. Every penny is one penny closer to funding a cure!

Below is a special message from Gwen’s Mom, Victoria, about what “Never Give Up” means to her and parents like her with children who have SMA.

WHY NEVER GIVE UP.

NEVER GIVE UP came about organically witnessing the bravery of the children and families impacted by SMA and the determination and selflessness of so many willing to push themselves to help make a difference. SMA impacts every muscle in the body, hindering the ability to walk, crawl, stand, eat, speak, and breathe. In spite of all they face every single day just to survive, SMA children all seem to possess an unmitigated determination and strength far beyond their young years. They are NEVER GIVE UP. Grieving parents, facing the unimaginable, coping with the grim diagnosis or the recent loss of their precious child, find the courage to tell their story, organize fundraisers, and push to change SMA’s future. They are NEVER GIVE UP. People not personally impacted by SMA continually rally together for the cause, get involved because they can do something, and move their bodies so one day those with SMA can too. They are NEVER GIVE UP.

If any group of people knows the meaning of the words “Never Give Up”, it’s runners. Join me on Thursday night in Central Park and show these families that they shouldn’t give up either.

If that’s not BTAT, I don’t know what is.

Now go out and run.

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6 thoughts on “Better Than the Alternative Tuesdays: Special Edition

  1. Thank you so very much for sharing this post and supporting the mission to change SMA. We truly believe one person can make a difference — and Lauren is a shining example of that. We will be running in California on Thursday to join the NEVER GIVE UP race virtually 🙂

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