A Dad. A Daughter. A Journey for a Cure.

The following post is written by NF Endurance Team member Darren Smith who rode on Aug. 28, 2010 in the Hotter’n Hell Hundred in Texas.

Well…we did it!

I say we because so many people were involved in supporting this effort in so many different ways — the generous  donations, the folks that helped me prepare, and the countless words of encouragement. If my Garmin is right, I rode more than 650 miles before leaving for Texas.  It all came together to ensure a strong finish on the bike and for the www.Riding4Perrie.com campaign.

The campaign raised more than $12,000 to directly fund research for the Children’s Tumor Foundation – research to give hope to Perrie and the more than 2 million others living with this very unforgiving disorder. I have to admit, I had total confidence in my friends and family in supporting this endeavor. I always knew we would hit the goal, but surpassing it was not expected; it was an overwhelming and incredible surprise! I felt like George Bailey in “It’s a Wonderful Life,” a man who when he needed support the most,  received it from everyone that was connected to him.

The ride, especially the last 20 miles, was not easy. It was like someone flipped a switch, and I was riding in 100 degree heat and a relentless head wind. The training in heat and learning how to take care of myself to keep cramps and dehydration away was so important to survive. It was an unnerving site to see many people drop out, get sick, or need IV’s. When you see people just stopping and sitting on the side of the road, or walking with their bike until the support folks picked them up — the magnitude of what you are involved in hits home.

The magnitude of why I was involved also hit home. I kept thinking of the very first time I read Perrie’s story…my very first thought after reading it was was….Darren…this is the part where you STEP UP!  This is where you step up as a father and as a human being. Here is your chance, your moment — seize it! So I just kept pedaling — pedaling against the heat, the wind, the uncertainty of what the next mile might bring.  I also thought of everyone who supported this effort, and how they too stepped up to meet this challenge and make a difference. They were people I have known my whole life, and people I have never met, but all showed generosity and genuine concern.

A very special thanks to the NF Endurance staff in making this happen and the team and families we had the pleasure to meet while in Texas. Thanks to you all for making me and my family feel welcome. It was a special feeling to be around folks affected directly or indirectly by NF and to know, sometimes without saying a word, that someone understands the place you are in. You are my heroes.

We have decided to leave the www.riding4Perrie.com site up, since some people still want to donate. Others have asked if they can make this their annual charity donation, and I say, of course! Perhaps I will do some sort of event down the road to continue the effort of raising funds for research.

I, along with my family, appreciate the support now and in the future.

Weekend Pacesetter (Aug. 27 – Aug. 29, 2010)

HOTTT
Steve Kendra has driven out to Texas for Hotter’n Hell, the largest sanctioned bike ride in the country, based in Wichita Falls. NFE will have more than nine riders braving hot temperatures to raise awareness and funds for NF. They have already met their goal of $10,000, but you can help them fund even more research by visiting their team page. One of the heroes for the weekend is Perrie Smith. Her dad, Darren, will be riding in her honor. Check out this article in the Times Record News on his efforts. To learn more about Perrie, read her story below.

Perrie Smith lives with more than 50 birthmarks all over her body. The biggest one is on her right leg; she calls it the birthmark the size of  Alabama. When Perrie was younger, she had to get a tumor removed from her upper lip and she had to endure comments from kids at school. “When I go to the pool, I see girls and boys that have only one birth mark that is barely noticeable,” said Perrie. “If I am wearing shorts people sometimes stare at my leg which makes me feel kind of bad.” In dance class, girls would come up to Perrie and start counting the birth marks on her back. “I may have NF, but I am living a life that I want to live and not letting anyone get to me.”

RuNFor Leo
On Friday, Aug. 27, 2010, the K-Bay 5K will raise funds for the Foundation in honor of little Leo in Homer, Alaska. For more information, please e-mail Denise Ogle at (Enable Javascript to see the email address)

SYMPOSIUM
If you live in Missouri, be sure and check out the Back to School Symposium hosted by the Foundation from 2:00 – 4:00 p.m. on Saturday, Aug. 28, 2010. The symposium will focus on “Advocacy for Learning Issues for Kids with NF.” Please join us as Dr. Joel Nadler provides back to school advice for parents on ways to advocate for their children in school.

TRAIN
The fall running season will be here soon. Have you started training for your next NFE event? Be sure and take advantage of our online training plans or get in touch with one of our certified coaches for a personalized training plan. Do you have specific training questions you would like answered by our training blogging expert, Anna Renderer? Make sure to post our comments, and we will get those questions to her.

Q&A
You asked, we answered. Check out Dr. Kim Hunter-Schaedle’s answers to questions submitted by the Foundation community about NF. Don’t worry if you missed out on submitting your question. Every few months she will be taking Q&A’s submitted on the blog and Facebook. You can follow the Foundation by visiting www.facebook.com/childrenstmrfdn.

Here is one she answered for us.
Q. How many children are born with NF in the U.S. each year?
A. NF affects one in every 3,000 children born each year in the United States (and throughout the rest of the world). The United States has 14 births per 1,000 capita per year, and a U.S. population of approximate 300 million. “By my estimate,” says Hunter-Schaedle, “this means there are 1,400 U.S. births affected by NF per year.”

ING NYC MARATHON
Don’t miss out on one of the most premier races in the country. Secure one of NFE’s last remaining spots for the ING NYC Marathon on Nov. 7, 2010. E-mail Molly ((Enable Javascript to see the email address)) for more information.

Upcoming Events in September:
- Rock ‘n’ Roll Virginia Beach 1/2 Marathon • Sunday, Sept. 5, 2010
- Rock ‘n’ Roll Philadelphia 1/2 Marathon • Sunday, Sept. 19, 2010

Finding Magic in Running for NFE

By: Chris Leano

Magic happens in these kind of runs.
Last year at the San Francisco Marathon it was meeting the Fisch family, and it was their words of encouragement that planted the seeds for my family to not feel sorry for ourselves and break out and do something positive.

This year was no different.   At mile 20, when I felt like I was hurting and cramping, a guy came up to me and started running with me for a while, then passed me up, turned around and stopped. He started to take a photo of me.  After I came up to him, he told me that he had a friend who had someone in his family who has NF; he never knew that we had the NF Endurance team.  I  told him to look us up on ctf.org, and after he thanked me, he told me to have a good run.

After that, the pain just magically went way.  The second time was at the end, when my thigh cramp came back, and that is when Steve came up with me. He gave me words of encouragement for the end of the race.  I was hurting and frustrated, and I could not see the finish, but Steve kept me focused. At that moment, I pictured my 13-year-old son Robby, sprinting to the end of his first 10K this year. I told myself to do the same for Robby, Leticia, Marcus, and other folks who have NF.   The strength from others just makes us stronger.

Leticia and Robby are such an inspiration. Leticia was paralyzed in her late 20s, and when they took out the tumor from her spine, the doctors told her that she would not have full strength in her legs, and perhaps have trouble even walking.  As we run, we keep in mind Paul Fisch’s words about the mind, and how very important it is to keep those “positive spirits;” it will take both the physical (dollars), and mental (words), to get us through this hurdle of NF in our lives.