Team Buzz
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Rockin Race Review
Lincoln Marathon
"Just a quick note to let you all know that we had a great weekend. (You should have been here :)) Lots of time & work, turned into a great reward again. The pasta dinner and the presentation of the award went great. On marathon morning the weather was perfect-- in the high 50's at 6:00 a.m., and stayed nice all day. There were sixteen people out on the course and lots of cheerleaders."
- Andy and Amy Schafer
What's YOUR story?
Olivia Hernandez
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Team Henry Gorder
NF Bike Nation
NF Hero Videos
Noah's Story
Noah in the News
Lincoln Marathon
In the News
The Dallas Diamonds Support Henry Wayne Gorder
Team Building
We
are currently working with the Foundation's National Clinics Coordinator, Kathleen
Berentsen, to recruit "Team Ambassadors." This will help distribute our team's brochures and give NF
families the opportunity to sign up for our team. If you have a relationship with an NF Clinic and would be willing to place
and restock team brochures (with permission), please e-mail Bob Skold
at bskold@ctf.org
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Upcoming Events:
June 19, 2009
Concert for Noah Tyrybon
5:30 p.m.
Corner of 1st & Elm
Wyandotte, Michigan
www.concertfornoah.com
June 20-28
Race Across America
Oceanside Calif. to Annapolis, Md.
June 20, 2009
Mayor's Marathon
Anchorage, Alaska
June 27, 2009
Rock 'n' Roll Seattle
Seattle, Wash.
June 26-28, 2009
Pacific Crest Wee kend Sports Festival
Sunriver, Ore.
July 11, 2009
Chasing Down the Cure
Carmel, Ind.
July 26, 2009
San Francisco Marathon
San Francisco, Calif.
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Spotted!
Bob Skold at the
Little Rock Marathon.
Take Five with Bob Skold
Five fundraising tips from Bob
1. Tell your personal story
2. Explain the how of your 'mission' (not just the what)
3. Use personal testimony; "quotes" from others
4. Make a specific donation offer
5. Give a reason to act NOW!
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Announcement: Genetic Counseling Survey Study
Kathleen Berentsen, the clinical program coordinator for the Foundation, needs your help with a survey.
Who? Adults with NF, parents of children with NF, and unaffected adult siblings of persons with How? Proceed to this online survey by Friday, June 12.
Why? Your participation helps to ensure more accurate results.
Please note that general results will be shared with NF, Inc. and the Children's Tumor Foundation. For more information, please contact Kathy Peters at 814.865.1392 or kfp1@psu.edu.
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Abby Owen and Josh Thieriot
at the Portland Marathon last October.
If you would like to join Abby's Army for future events such as San Francisco and Portland, please click here.
To read more about Abby click here.
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Several members of Abby's Army take a break at the Portland Marathon.
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RunWell
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Do you need some more help with your training program? The New York Times Web site offers a program called RunWell that customizes your training plan based on experience, race date and program preference. Simply create a login user ID and password and you can choose from various training methods including, Galloway, New York Flyers, Team for Kids, McMillan and Grete Waitz.
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Make the NF Endurance Team part
of your summer vacation
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From the Director
Hello Team,
Welcome to our summer e-blast. I think you will find this issue has useful information to update you on what we have been up to and what we are striving for next.
Thank you for being part of this remarkable effort to raise awareness and enable effective treatments and a cure for NF. The first half of 2009 shattered records for NF Endurance signups - almost 800 participants in just the first five months! While our economy might be in a recession, NF is most certainly not and neither is NF Endurance!
Each day I am overwhelmed by the stories of the NF heroes we train for and by the determination demonstrated by those of you who push yourselves far beyond familiar boundaries, both physically and emotionally.
As I prepare to join my teammates in the Race Across America in a few days, I am reminded how challenging it is to muster the courage to again ask my friends and family to support the Children's Tumor Foundation.
And, yet, I know it is easier for me because I see the progress we are making daily. Whether it is our newly funded clinical trials, the national NF clinic network, the preclinical consortium, or the many other wonderful programs of the Children's Tumor Foundation, I am encouraged by the progress we have made in just a few short years. Please click here to read more about how your fundraising dollars continue to make a difference. And, check out the First Foundation Funded NF1 and NF2 Clinical Trials.
Most of you have a NF hero who you run or ride for. I would be willing to bet that like my daughter does for me, that hero inspires you to go out and make a difference. It is ironic to me how beyond the obvious heartache that comes with NF, this disorder inspires an attitude of resilience --- to rise above perceived limits to do the extraordinary. Of course we would all choose not to have NF in our lives, but out of this adversity comes this silver lining -- we can accomplish so much more than we ever thought possible. Limits, for the most part, are self-imposed. That's why I like our new tag line so much...
NF Endurance. It's in you. It's possible.
Steve Kendra
P.S. We still have charity slots available for the NYC Half Marathon on
Sunday, August 16th which is sold out. There is a $1,000 fundraising
minimum. Please e-mail Trish Hardy at thardy@ctf.org if you are
interested. We would love to have these spots filled by July.
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RAAM
The NF Endurance Team has three teams participating in the Race Across America from June 20-28, 2009.
The three teams hail members from across the United States and each honor NF Heroes and will bike from Oceanside, Calif., to Annapolis, Md.
Captained by NF Endurance Team Director Steve Kendra, Ari's Angels rides for several NF Heroes - Kendra's daughter, Arianna, crew chief Connie Oslica's daughter, Katie, and support crew member Florence McCarthy's daughter, Aidan. Steve and Dan Kendra, Bill Hardy, and Bill Edmonds will attempt to better their team time of 8 days and 14 hours from 2007.
Led by Alan Sterner, Drew's Crew honors Drew Budlong. Other relay members include Richard Keith, Anthony Gallo and Anthony Colasurdo. Glenn Hermann is the crew chief. "It was an overwhelming feeling to have people, veritable strangers, want to do this in honor of Drew," says Trisha Budlong, mother of Drew. "It is one thing to have it be our driving focus as his parents, but to have four men - with no direct touch to NF want to make this their charity of choice, was astounding."
Tracy Wirtanen and her husband Brent DeBenedet will lead Team Sami in honor of Sami, their son who was recently diagnosed with NF. "We are very passionate about raising research funds that will focus on prevention of tumor growth in children," says Wirtanen. Sami's team also includes Pete Coons and Ted Miller.
Team members recognize the challenges of racing across the country in variable conditions and terrain. However, thinking about the challenges of NF - multiple tumors, learning disabilities, bone abnormalities, deafness, balance problems, decreased mobility and vision loss, cultivates perspective and strategy.
"Our team strategy is to keep it simple -- endure the difficult, remain flexible in the moment and drink, eat, ride and raise the dollar that finds the cure," says Connie Oslica.
Follow the teams as they trek across the country...
Ari's Angels
Blog
Drew's Crew
Blog
Twitter
Team Sami
Blog
*Bill Edmonds (1)
*Ari's Angels at the finish line (2)
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Chasing Down the Cure
What: A 5K Run/Walk with the purpose of raising awareness of and funds for research and patient care for neurofibromatoses (types I
and II and schwannomatosis). All funds will be donated directly to the Foundation.
When: Saturday, July 11, 2009 8:30 a.m.
Where: Northview Christian Life Church (www.nvcl.org)
5535 E. 131st Street
Carmel, IN 46033
*The church campus has a self-contained course, which offers a unique combination of on-road and off-road running and walking.
Who: All ages, genders, and skill levels welcome. Prizes will be provided in age/gender categories.
How: Early registration (prior to July 1st) is $15.00
Late registration (July 1st to the day of the race) is $20.00.
*Late registrants are not guaranteed a T-Shirt. Participants are encouraged to use the Donation Fundraising Page associated with the race.
When registering, please follow these instructions: Click the Register for this Event tab and click on the Register Now Tab. Create a free active.com account, then click on 2009 Running Events. Chasing Down the Cure should show up as the 2nd race on the page. Follow instructions from there.
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Creative Fundraising Ideas 
- Tara McFarland recently had a fun run with preschool/young elementary school students and raised more than $2,286.
- George Yarns, father of Tammy Miskowski, wore his kilt for the month of April up in the chilly Pocono Mountains and raised $2,300.
- Kate Hickman and Olivia Hallman (at right) took advantage of a warm spring Pennsylvania day to have
 a lemonade sale to benefit the Foundation. - Patti DeVito coordinated the Centenary Walk-a-thon, a fun walk for preschool and young children in Metuchen, N.J. The event generated more than $1,200 for NF research.
- Frank, Shannon, Noah and Ramona Tyrybon raised $1,000 at their garage sale in May to benefit the Children's Tumor Foundation. "We did really well on the second day by offering 'all you can fit in a bag' for five dollars," said Frank Tyrybon. "At the end of the sale, we met a couple who worked at a flea market and
 they gave us $50 to haul away all our leftovers." - Ticket sales and a two-item silent auction including lyrics signed by Hillary Lindsey, Carrie Underwood and Luke Laird, and a signed picture of Dirks Bentley, brought in $5,500 for the Tumornators on April 3, 2009 in Athens, Ga. Chad Leathers organized the event to benefit the Children's Tumor Foundation.
- Roger Strang started his journey to cycle across America on June
 1, 2009.
He will be cycling from Portland, Ore. to Ithaca, N.Y. to raise money forthe Children's Tumor Foundation. He will pass through Oregon, Nevada, Idaho, Utah, Wyoming, South Dakota, Nebraska, Iowa, Wisconsin, Illinois, Indiana, Ohio, Pennsylvania and New York. Please e-mail Roger at roger.e.strang@gmail.com if you can offer our teammate a warm meal, shower, or maybe even a bed as he treks across the country for NF. He would be grateful for your support! Strang is part of the Delta Tau Delta fraternity at Cornell University. The Children's Tumor Foundation is the national charity of the Delta Tau Delta chapter at Cornell. - On June 10 Stephen Prince will start his trek across the nation to raise money for NF. For more on Stephen's journey and reason for riding, check out NF BIKE NATION.
*George Yarns (1)
*Kate Hickman and Olivia Hallman (2)
*Frank and Noah Tyrybon (3)
*Roger Strang (4)
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From the Team Captain Coordinator
From Sean in Oregon to Candice in Tampa...from the McCarthys in New Jersey to Andy and Amy in Nebraska (and many, many more in between)...I believe that something exciting is brewing among the ranks of the NF Endur ance Team Captains. We will be converging on Colorado in August to run a 200 mile relay from Ft. Collins over Rabbit Ear Pass and ending in Steamboat Springs where we will hold a symposium to strengthen our teams. There are approximately thirty passionate, motivated and dedicated team captains that exceed our expectations at each event. We are thankful for our volunteer team captains and the work they do to help us get closer to finding a cure for NF!
ALSO...  As the team captain for Disney, I would like to invite you to run this magical event in January. Although the race is officially sold out, we still have Disney Marathon, Half Marathon and Goofy spots available. For the half and full marathons there is a $600 fundraising commitment. A Goofy slot requires a $1,200 fundraising commitment. If you are interested, please register on our Web site.
Until there is a cure,
Tracy Draper
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*Laura Inman and Tracy Draper (1)
*Toni and Amanda Huttenlock (2)
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Why I Run
As parents, we feel a strong need and desire to fix everything, or make
things right, for our children. Even as our kids grow into adults,
that desire to nurture and protect them from harm is still there.
Unfortunately, as parents of chronically ill children, we cannot live
forever. Our bodies eventually give in to old age, and finally,
death. But our children live on, which is as it should be. We can
assess when our children need to see a doctor, or need medication, or
just a big, long, hug from us. But, we will not be on this earth long
enough to see our children into old age. 
The solution, then, is
to be proactive as much as possible while we are here. We must put all
things in order for our chronically ill children, so that when we are
no longer able to give them that loving hug, they will feel that love
through our planning for their future.
The key to Ashley's
future health, is finding treatments and eventually a cure, for NF.
Treatments to 'zap' these malicious tumors once and for all! This
would mean Ashley would be free; free of pain medication, countless
doctor's appointments, and fear of the future. Ashley would be free to
live her life as she dreams it should be, and to make a difference in
other people's lives.
Becky Vacanti
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ABOVE RIGHT: Ashley Vacanti, daughter of Becky & Dan
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 NF Endurance.
It's in you.
It's possible.
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