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Children's Tumor Foundation

The latest of all topics concerning NF and Schwannomatosis.
Apr 02
2012

CDMRP Grant Funding Announced

Posted by John Risner in Untagged 

We ask our supporters through the spring and summer to join our advocacy program to lobby Congress for continued funding of NF research through the Congressionally Directed Medical Research Program-NF Research Program.

The results of this work can be seen here:  http://cdmrp.army.mil/funding/nfrp.shtml

The CDRMP recently announced the grants available for FY2012.  These funds were made available through the work of the NF community last year.  Our advocacy campaign for FY2013, was launched in February and currently focuses on the House of Representatives.  When the House finishes their work on the bill and it moves to the Senate, which is expected to be in June or July, we will again be contacting you to email your Senators to continue this vital program.

Thank you for your past support of this program,

John Risner

Mar 27
2012

Justin Bell and Racing4Research Win Big in Florida

Posted by Mary Vetting in Racing4Research , nf , neurofibromatosis , Children's Tumor Foundation , awareness

Justin Bell Sweeps Pirelli World Challenge GTS Races in St. Petersburg for Children’s Tumor Foundation / Racing4Research and eBay Motors and Mobile

Late Pass Gives Bell Second Weekend Win and First Career Sweep in the No. 50 Tiger Racing Ford Mustang Boss 302S


ST. PETERSBURG, Florida (March 25, 2012) – Justin Bell scored the first race-weekend sweep in his 25-year motorsports career in the season-opening event of the Pirelli World Challenge at the Grand Prix of St. Petersburg where he backed up yesterday’s opening race win with an equally convincing victory Sunday morning in the No. 50 Tiger Racing Ford Mustang Boss 302S.

JustinBellThe victories are Bell’s first in World Challenge (WC) competition in addition to being firsts in WC for the Children’s Tumor Foundation's (CTF) Racing4Research program and Bell’s partners eBay Motors and Mobile.

Like yesterday, when he won from seventh on the starting grid, Bell had to race through the field again on Sunday. Although he started second, a stalled car in front of him as the green flag dropped quickly put Bell outside of the top-10 in the running order.

“Yesterday was full of unknowns for me,” Bell said. “I had the element of surprise on people and they didn’t know what I was going to be up to. Today I had a car stall in front of me right at the start and I may have been as far down as 12th into the first corner. I was really motivated, after dropping to like the sixth row right at the start, to come back and at least get a podium for the team.”

Bell began to pick up positions before zeroing in on race leader Peter Cunningham just as he did in Saturday’s race. His winning pass once again came in Turn 1, but this time it was less than two laps from the finish, the only race laps Bell led all day.

“The overtaking I had to do was just right on the edge of not being able to make it,” Bell said. “The smallest gap they gave me I went through, but Cunningham was incredibly fair. He went wide, I was actually going to set him up for Turn 4, but he suddenly went wide in Turn 1 and I was like, ‘that’s it, I am done.’ I don’t know who would have come off worse if we hit, but he was incredibly fair and I think he may have known I had him at that point.”

Bell is substitute driving in 2012’s opening WC rounds for reigning class champion and Tiger Racing manager Paul Brown, who is recovering from minor surgery. Bell brought both the backing from eBay Motors and Mobile and his partnership and relationship with the CTF / Racing4Research program with him to the team.

“I am just incredibly happy and thankful to Paul Brown for putting me in the car,” Bell said. “For eBay Motors and Mobile for inviting me and, of course, for these great CTF kids wandering around and supporting us when they have so much else going on, it was all just fantastic.”

About two dozen young NF patients, or “heroes,” and their families visited with Bell and other WC teams at the track this weekend. The CTF / Racing4Research program increases awareness of neurofibromatosis (NF) and raises funds for research to find effective treatments for the debilitating disorder. Donations for the cause can be made at www.ctf.org where additional information on the program, the Foundation, and NF can also be found.

Bell first joined the CTF / Racing4Research program this past January, co-driving a Porsche GT3 in the Rolex 24 At Daytona, and was honored to be racing for the cause again this weekend.

“We came off Daytona on an emotional high if not a success high,” Bell said. “This makes up for a bad result there in the Rolex 24.”

Bell is currently preparing for his second season as the host of The World’s Fastest Car Show Hosted by Justin Bell, a unique web, mobile and app-accessible show available only at eBay Motors and on eBay Mobile.
Next up for Justin Bell and the No. 50 Tiger Racing Ford Mustang Boss 302S team is Round 2 of the Pirelli World Challenge at the Toyota Grand Prix of Long Beach, April 13 – 15.

About the Children's Tumor Foundation and Racing4Research: Developed by the Children’s Tumor Foundation, the Racing4Research (R4R) program utilizes competitive, professional auto racing as a vehicle to increase awareness of neurofibromatosis and raise funds for research through corporate sponsorship, personal donations, and individual fundraising by NF Heroes: children and adults from around the country who live with neurofibromatosis. NF affects one in every 3,000 children, more than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined, and can lead to a wide variety of complications, including blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities and excruciating and disabling pain. The Racing4Research program offers children and families living with the disorder a uniquely empowering weekend, and has raised over $1.5 million dollars since its inception five years ago. Donations can be made at www.racing4research.org.

JustinBellEbayCTFLogos

Mar 16
2012

CTF to 'Fuel The Cure' in NASCAR with Quicken Loans and Stewart-Haas Racing

Posted by Jill Beck in Racing4Research , NASCAR , fundraising , Fuel The Cure

 

It's not often you really get to surprise a group of people... Tuesday, March 13th was one of those days.  I was in Charlotte, North Carolina for the official announcement of our NASCAR program with Quicken Loans and Stewart-Haas Racing.  We were fortunate that the team had arranged for the big announcement to be made on SPEED's NASCAR Race Hub television show.  I invited a few of the local NF Hero families to join us at the studio where they could meet the driver and see the car in person.  I didn't tell them anything about what they would be doing - they were simply asked to join us for a special Racing4Research event at the SPEED studio.

 

Three families from the local area joined us at SPEED midday for the taping.  They all arrived eager to know what they would be doing and it was a thrill to share with our young NF Heroes that they would be meeting NASCAR Sprint Cup driver Ryan Newman and could sit in the No. 39 Children's Tumor Foundation / Quicken Loans Chevrolet on the Race Hub set.  The smiles and excitement on their faces was priceless.

 

Our group watched the segment taping on the in-studio feed and after they completed the filming, the families were able to go into the Race Hub studio to meet Ryan Newman.  Ryan was incredibly gracious to our families, helping each of the children into the No. 39 car so they could feel what it's like to sit in a real NASCAR Sprint Cup race car.  One of our little NF Heroes, 3-year-old Sawyer, was happy to show Ryan his prothesis and to show off his "driving skills" behind the wheel of the No. 39. 

 

 

From the perspective of the Children's Tumor Foundation and our Racing4Research program, it was a tremendous day.  We were able to announce that Children's Tumor Foundation will be featured on the No. 39 during the upcoming NASCAR race in Sonoma, CA on June 24, 2012.  Quicken Loans and Stewart-Haas Racing have set the goal of raising $390,000 for the Foundation with the "Fuel The Cure with Ryan Newman and the Children's Tumor Foundation" campaign.  As with all of our R4R events, our Heroes are the heart of our program and it was a thrill to share such a unique day with three inspiring, amazing NF Heroes and their families.

 

Be sure to tell your friends and family about the "Fuel the Cure" campaign - more information can be found at www.fuelthecure.org. And stay tuned in the coming days for details about the race in Sonoma where we will all FUEL THE CURE for NF!

 

Jill Beck 
Director, Racing4Research program
Mar 16
2012

New Center for Tumor-Multiplying Diseases at Stanford Hospital

Posted by Mary Vetting in Stanford Hospital , schwannomatosis , Research , NF2 , NF1 , nf , neurofibromatosis

On March 15, 2012, Stanford Hospital announced the launch of a new program, led by Dr. Steven Chang, to treat rare tumor-multiplying diseases.

 

Stanford's program includes a team of 12 specialists in several fields: neurosurgery, epilepsy, neuro-ophthalmology, neuro-oncology, neuro-otology, neuro-interventional radiology, urology, and general surgery. 

 

"The goal," Chang said, "is to give cutting-edge care for conditions like Knodel's, neurofibromatosis 2 (NF2) and others including another form of neurofibromatosis, schwannomatosis tuberous sclerosis, von Hippel-Lindau disease, Sturge Weber syndrome and hemorrhagic telangiectasia."

 

Please click here to read more.

Feb 21
2012

NFL Star Tim Tebow Takes NF Hero Presli Collins On Quite The "First Date!"

Posted by Mary Vetting in Tim Tebow , Shaquille O'Neal , Presli Collins , NF1 , nf , Cartoon Network , awareness

On February 18, 2012, a 10-year-old girl from Parker, Colorado was taken on her first “date,” one she will certainly never forget. It was with Denver Bronco’s quarterback and all-around "good guy" Tim Tebow.  timandPresli
Presli Collins, who lives with NF1, was invited on this “date” by the Tim Tebow Foundation’s “Wish 15” program, which grants wishes to children with serious illnesses. Presli's mother, Lisa, says they couldn’t believe it when Tebow’s foundation called last week to arrange the trip. “She had just gone through a lot, and when we got the notice for this she was just completely shocked,” said Lisa.

Presli became an "NF Hero" when she was diagnosed with neurofibromatosis in 2008. Affecting 1 in every 3000 people, NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. Presli has bravely endured brain and back surgery to excise tumors, and anterior and posterior spinal fusion surgery to correct, as much as possible, scoliosis that has occurred due to NF.

While in Los Angeles, Presli was given true VIP treatment including a new dress and hairstyle, photos on the red carpet with Tebow, and "meet and greets" with celebrities such as Shaquille O'Neal, Nickelodeon star Nathan Kress, and the Disney Channel's China Anne McClain.

redCarpet2Presli's Dad remarked that he’s, "never seen her smile or be as happy as she was that weekend."  Presli's Mom continued, “I can’t even express how grateful we are for the opportunity she’s had [and] the joy she’s had."

"I got to meet Tim Tebow and he was a thousand times nicer than you think he is," said Presli. "In the middle of my dinner he took me to the chocolate fountain. [He also gave me an autographed football that] says, 'To Presli, number 15, Tim Tebow, God bless, go Broncos. Thank you for being an amazing date."

Presli is a happy, active, young girl, but the uncertainty of NF can be wearing. “I think the hardest part is not knowing how [NF will] manifest in her body,” says her mother. But the Collins's remain positive and optimistic, and encourage people to support the Tim Tebow Foundation, Children’s Hospital of Orange County, and the Children’s Tumor Foundation.

Some have said that Tim Tebow is the most exciting player in the NFL today. He is a Heisman Trophy winner, an All-American BCS champion, a first round draft pick, and a record setting professional Quarterback. He can now add "NF Hero's Hero" to his list of accolades, with the sincere gratitude and appreciation of the Children's Tumor Foundation and the millions of families worldwide who face NF everyday.

To learn more, click here for an article and video from The Huffington Post.

PresliTebowShaq

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Upcoming Events

Tue May 29, 2012 @ 4:00pm - 09:00pm
California: R4R Dining to Donate
Wed May 30, 2012 @ 4:00am - 08:00pm
Western NY: Racing4Tristyn- Go Kart Event
Wed May 30, 2012 @ 4:00am - 08:00pm
Western NY: Racing4Tristyn- Go Kart Event
Sat Jun 02, 2012 @ 2:00am - 04:00pm
PA: Zumba Party
Sat Jun 02, 2012 @ 9:00am -
MA- Molly's Spring for a Cure, June 2nd
Sun Jun 03, 2012 @ 8:00am -
California: 7th Annual LA Walk at CBS Studio Center

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