A note from Steve
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Hello Friends,
NF Endurance provides inspiration, hope and now measurable results for the more than two million people who suffer with NF and their loved ones. Our mission: to enable treatments and a cure, to raise awareness about NF, and to support the NF family. We most definitely ruNFor a reason.
Over the past 10 years, more than 5,000 of us have run, ridden, walked, or climbed our way to becoming one of the leading endurance charity teams in the country. And, we've raised more than $6 million to keep the researchers, scientists and clinicians working hard to make a better life possible for all those who struggle with NF.
Once again this was an excellent growth year for NF Endurance - I'm especially proud considering the economic environment, and the sobering news I've heard from almost all of the other endurance charity team out there.
1,562 participants registered with our team last year raising nearly $1.4 million to support the medical programs and research of the Children's Tumor Foundation. That's nearly a tenfold increase in the past five years alone. This is exciting stuff.
Unfortunately, I'm also reminded regularly just how far we have to go. We've lost some very good friends this year to this disorder, and the pain, suffering, and loss I see each week is sobering, to say the least. So, I'd like to challenge you to join us in 2010 in our quest to end NF for good! Our goal this year is to raise one dollar for every person in the world with NF. That's two million dollars to fund the best possible world class NF research in 2010! We've gotten where we are today by dreaming big and blowing past our perceived limitations - both physically and financially. A good friend of mine once told me, "Steve, it ain't big, unless we make it big."
Let's dream big. . .let's make it big. I'd love to see you at one of our events this year. Check out our entire schedule of events by clicking here.
We run for our families. We run for our friends. We ruNFor a reason!
It's in you. It's possible. I'll see you on the course.
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Bob's Corner
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A NOTE FROM BOBIn my mid-40's, in the process of losing most of my hearing, I was diagnosed with NF2. That is a life-changer all right! Before then I could run a 10K and now after joining NF Endurance in year 2000, I look forward to running one marathon a month (note here: I run steady and slow and look at them as 'vacation runs'). Can't hear, can run. Who knew a loss of hearing would lead to a lifestyle of running? Life is full of surprises. There is more to the story. For me, running has allowed me to bloom where I am planted - to participate with an endurance sports charity team, combining distance running and the challenges that come with raising money for NF research. It just feels good to be a part of the solution - to make a difference. I may honestly say that on the course, after the marathon 22-mile marker, I feel like I am the happiest person in the world -- I am moving toward another finish line. I like to finish what I start, and I'm running for others. When you run for a cause, it's not the speed that counts, but the purpose of the journey. The ultimate finish line is treatments and a cure for NF. We really do run for love and money and the glory of it all. Serving on the team staff, I have had the privilege to assist many team participants, friends and family who have a NF touch. There are also those who run for us as a select charity; they raise money while enjoying their running journey. The stories are quite inspiring, and I for one am grateful I get to meet many in person, and all by e-mail (smile here). Speaking on behalf of all the staff we may affirm what Jeff Bezos said, "We see our customers as invited guests to a party, and we are the hosts. It's our job every day to make every important aspect of the customer experience a little bit better." Thanks for joining our team! We consider it a high privilege to serve you as together we may "be the change we wish to see in the world." -- BOBSKOLD Did you know that Bob Skold won the 2010 Carlsbad Marathon "Hero of the Marathon Award?" Well, we have to admit that we a re very proud of Bob and the encouragement and wisdom he offers our team. Bob's Goal for 2010:
To run in one marathon each month this year until he reaches 50
lifetime marathons at the Athens Marathon Classic in October.
Ironically the event is on his 56th birthday -- Oct. 31, 2010! It's
also his "money run" as he presses on for his goal of $50,000 for the
Foundation to continue enable treatments and its quest for a cure for
NF. Here is another article about Bob. BOB'S TIP: If you or your family are currently patients of an NF Clinic, please consider serving as a Team Ambassador by helping to display team brochures so we may connect with more NF families. We want to offer them the opportunity to join the team. Brochure placement is done in coordination with the Clinic
Supervisor. If interested in this team-building opportunity, please
contact Bob at bskold@ctf.org
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5 Important Advancements in Research
...that are helping our NF Heroes like Madison.
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1. Neurofibromatosis Clinical Trials Pipeline Grows.
2. Basic Science Knowledge in Neurofibromatosis Advances.
3. Getting the Right Diagnosis.
4. Fuelling the Neurofibromatosis Drug Pipeline.
5. Collaboration on clinical trials.
*These were compiled by Dr. Kim Hunter-Schaedle and can be found on the blog at www.ctf.org/blog. For the latest news in NF research subscribe to the blog and receive e-mail notification of updates.
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Antarctica Marathon
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Follow Steve and the 12-person Antarctica Marathon team as they run for a cure at the end of the earth. They leave on Feb. 28, 2010 and will return on March 15, 2010. Steve will do his best to send us several updates from their epic journey. We will post their adventures on the NF Energy blog. What are some things that you want to know about the race? Will they run with penguins? Do they have to ice fish for dinner? Send an e-mail to ebrown@ctf.org and we'll get those questions to the team! Check out some of the Antarctica teammates in the news.- George Haddad http://bit.ly/75txrz |
NF Energy - Check out the team blog
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"NF Energy" is the Endurance team blog and offers an array of articles on running, cycling and healthy living. Do you have a great story run or something that you would like to share? E-mail Emily at ebrown@ctf.org. AND...we're on Facebook and Twitter!
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Help us tag photos on the fan page!
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We are trying to put a lot of our pictures and race photos on our Facebook fan page albums. If you are on Facebook, and have a few extra minutes, please help us identify or "tag" our awesome teammates! It would help us a LOT. E-mail Emily if you have any questions at ebrown@ctf.org.
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Let's rock Chicago with (at least) 25 runners...
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- Sign up today before the Bank of America Chicago Marathon sells out. Make sure to type in "Children's Tumor Foundation" as your charity of choice. When we get 25 runners, we will become an associate level charity which will generate even more awareness about NF. After you sign up at chicagomarathon.com, please signup at NFEndurance.org. If you or your friends have already signed up, you can still count towards our goal of at least 25 runners. Just send Trish an e-mail thardy@ctf.org.
- Love Rock 'n' Roll events? Check out our scheduled team R'n'R events for 2010. And, here are some more of the southeast events where NF Endurance will be.
- NYC 1/2 Marathon - We still have slots available. If you are interested in running in the first spring NYC 1/2, please e-mail Emily (ebrown@ctf.org).
***IMPORTANT NYC MARATHON INFORMATION*** The lottery closes earlier this year. Key date to remember: March 15, 2010. If you are interested in the 2010 ING NYC Marathon, please "take 3" and...
1. Go to the New York Road Runners website to apply
2. Send Trish (thardy@ctf.org) your lottery number
3. Sign up at NFEndurance.org
- Portland Marathon (and inaugural half)! - On 10.10.10 the Portland Marathon will have its first half marathon. The event is now sold out, but we still have slots!
- Don't miss our 24.5 cheer zone at the Twin Cities Marathon! For more information, please click here.
- Flickr - Check out our Flickr account (flickr.com/NFEndurance) We are moving a lot of our photos on Flickr so that you can have more pictures to choose from. Help us tag! If you see a photo and know the person's name, you can e-mail Emily at ebrown@ctf.org.
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Fundraising Help Guide
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Based upon research and our
experience, the average contribution is $80 (you do tend to get what
you ask for). Say you would like to raise $3,000 for NF research...In
general, 7 out of 10 of the people you contact will contribute. So, you
would need to ask 53 people to reach this goal.
To be successful, you contact 53 people and you may surpass your goal! Where can I find 53
people to ask? Co-workers, neighbors, faith-based communities, local meeting groups, friends, family, doctors, businesses etc. Some runners ask
for a dollar amount based on the number of miles they are running; a
half marathoner might set a goal of $1,300 and a marathoner might set a
goal of $2,600. Remember,
NF Endurance has travel reimbursement levels too - so you may want to
set your goal based on your plan for reimbursement. To download an ActiveGiving Fundraising Help click here.
To get more fundraising tips go to our team's fundraising help section. |
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Team Buzz
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"I enjoyed being part of the NF Endurance Team this year. Everyone went
out of their way to be very nice to me and make me feel welcome."
- K.M.
"The marathon was such an amazing experience! The dedication and
comittment of this team (runners, families, volunteers, coordinators,
captains, etc.) is absolutely inspiring."
- J. W.
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Team Captain Spotlight: Cindy Rulon, Seattle R'n'R
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Cindy Rulon captained our first NF Endurance Team at the Seattle R'n'R in June. She held training runs, recruited volunteers, crafted team communications, compiled a team DVD for the pasta dinner and motivated a roster of more than 60 members. At the pasta dinner she organized a 'kids room' to entertain the little ones with coloring activities.
"Cindy was an incredible asset to the Seattle R'n'R team - our inaugural event in Seattle," said Tracy Draper, team captain coordinator. Cindy raised $1,042.16 in 2009 for the Rock 'n' Roll Seattle Marathon. And, although she suffered a slight hip injury after all of the training, she is back to running and preparing for the 2010 Seattle Rock 'n' Roll. "Cindy's positive, cheerful demeanor is contagious! She poured her heart and soul into the team" said Tracy.
Join Cindy and her family at the 2010 Rock 'n' Roll Seattle Marathon.
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Fundraising Tips
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- Two miles in your undies!?! Cupid's Undie Run will be held on Feb. 13, 2010. The event has already amassed $6,000 to benefit the Children's Tumor Foundation.
- Patrick Wilson hosted a PubCrawl in Portland, Ore. to raise awareness and money for the Foundation. He, along with Portland Team Captain Jean Fitzgerald sported our neon shirts and have raised more than $600. Patrick is running the R'n'R half marathon in Seattle in June. He plans on having another pub crawl in April. Check out his fundraising efforts here.
- On Nov. 27, 2009, Chad and the Tumornators held the third annual "Rock4Research" and raised $3,500.
- Host a jewelry party. Here is an example of how Emily raised money through inviting friends and family to get a head start on Christmas shopping.
- To download an ActiveGiving Fundraising Help Guide click here.
- To get more tips, visit our team's fundraising section.
- For specific questions, e-mail Bob (bskold@ctf.org)
Check out these fundraising pages for some great ideas on how to engage your donors...
- Tumornators of Georgia
- José Dominguez and family from Missouri
- Team Kate Cochran
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Meet the Staff
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Steve
skendra@ctf.org
*director
Trish
thardy@ctf.org
*program coordinator
Suzanne
shickman@ctf.org
*fundraising & incentives
Beth
bharkins@ctf.org
*event planner
Valerie
vblaxall@ctf.org
*runner packets & apparel
Molly
mfisher@ctf.org
*team store & marketing
Emily
ebrown@ctf.org
*team communications
Bob
bskold@ctf.org
*development and fundraising website customization
Tracy
tdraper@ctf.org
*team captain coordinator
For more information about the NFET staff,
click here.
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