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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.
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.
Breakfast for Dinner
“This is our standard Friday night dinner after our crazy week!” said Laura Perfetti. Pancakes are Julia “Ladybug” Perfetti’s favorite. Julia loves breakfast for dinner. Laura, mom to four kids, loves that pancakes are quick and easy.
Ladybug Pancakes
2 cups flour
2 cups milk
1 teaspoon baking powder
1/4 cup sugar
2 eggs
2 pinches of salt
A quick shake of cinnamon, optional
3 chocolate chips or blueberries per pancake, optional
Mix ingredients. Use a small cup to pour batter onto lightly oiled griddle or frying pan over medium heat. Brown on both sides. Serve hot. *This recipe is doubled for a four child household. The Perfetti’s like to sprinkle raspberries, strawberries, oranges and watermelon on top.
RSVP
The last day to RSVP for the Georgia NF Symposium is Monday, May 22, 2010. The May 26th symposium is packed with information about advances in NF research and advice on issues facing patients and families living with NF. Speakers will include Dr. Paul Fernhoff, Dr. Bruce Korf, Dr. Tobey MacDonald, Dr. Suma Shankar, Kim Bishoff and George Orfanakos. For more information about the symposium please read this SymposiumBrochure.
SCHEDULE
Check out Running in the USA for a complete schedule of race events to help prepare you for your next NFE event. Running in the USA catalogs upcoming races from across the country from 5Ks to 50ks.
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. 
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.”
