Foundation News & Events

CTF Receives Top Charity Rating for 2nd Straight Year

For the second straight year the Children's Tumor Foundation, the leading non-government funding source of neurofibromatosis (NF) research, has been awarded a four star (highest) rating by Charity Navigator, America's largest independent charity evaluator. Only 19% of charities reviewed by Charity Navigator have received at least two consecutive four star evaluations.

"Children's Tumor Foundation consistently executes its mission in a fiscally responsible way, and outperforms most other charities in America," wrote Ken Berger, President and CEO of Charity Navigator. "This 'exceptional' designation from Charity Navigator differentiates Children's Tumor Foundation from its peers and demonstrates to the public it is worthy of their trust."

"We are committed to ensuring that every dollar raised is put to the very best use to improve the lives of those living with NF1, NF2, and schwannomatosis," said George Orfanakos, President of the Children's Tumor Foundation. "From the transparency of our financial reporting [cited in the New York Times], to the success of our research programs in receiving follow-on funding -- which further amplifies our donors' support -- that commitment is demonstrable. We are honored that Charity Navigator has once again recognized it."

The annual rating, which Charity Navigator uses to meet its mission of guiding “intelligent giving,” is based on two broad areas: organizational efficiency and organizational capacity, or, how responsibly a charity functions day to day, and how well positioned it is to sustain its programs over time. The charity is then awarded an overall rating, ranging from zero to four stars, with four stars being the highest rating.

To view the Children's Tumor Foundation's Charity Navigator page please click here.

To view the letter acknowledging the Foundation's rating please click here (pdf).

Jack Burke: NF Hero, Busy Guy

Ed note: the following article can be found in the forthcoming NF News, the newsletter of the Children's Tumor Foundation, if you'd like to be added to our mailing list please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Jack Burke wants to be the busiest man in the world. That may seem like a tall order for a six-year-old but it doesn’t deter this NF Hero whose desired future professions range from doctor to actor.

Despite his audacious ambitions and upbeat attitude Jack hasn’t had the easiest early years. Diagnosed with NF1 at two-years old due to café-au-lait spots and vision difficulties it was later discovered that Jack had a plexiform neurofibroma on his left eye orbit. Jack’s parents, Beth and Jake, have him monitored regularly by physicians and work hard to ensure he receives the very best care. But they’ve also taken to building the NF community in their hometown of Atlanta and raising funds for research.

“When we first got the diagnosis we didn’t know what to expect,” said Beth. “We kept it close to our vest and didn’t tell a lot of people. Then we realized the only way we could cure our hopelessness and helplessness was to do something about it."

Beth contacted Stephanie Yolish at the Foundation and the two began planning a symposium at Children's Hospital of Atlanta. They invited Dr. Bruce Korf and sent a mass email to area families affected by NF. More than 100 people gathered for what
was an eye-opening experience, both in terms of what was learned and in terms of how vast the community was.

“We were shocked at the response rate,” said Beth. “People were craving information and collective action. That day we started
building toward a more cohesive group.”

The symposium also motivated the Burkes to push forward with their fundraising activities. They signed-up Jack to be a Racing4Research NF Hero as a way to introduce him to NF and some of the others who live with the disorder, and to also give them a chance to raise money for research. Over the course of 2010 they hosted events and shared Jack’s story with friends and family.

“The response was amazing,” Jake said. “We learned that a lot of people are just looking to be asked to help.”

In total the Burkes raised more than $15,000 toward Jack’s NF Hero campaign and then they joined the Foundation in Daytona at the Rolex 24 where Jack had a chance to meet many other kids affected by NF.

“It was amazing on several levels,” said Jake of the R4R experience. “It was a great way to introduce Jack to a life of NF in a very positive and hopeful way. The empowerment that he got, when he stood in front of a room of 200 people and spoke into a microphone – it was a huge step.”

The experience also gave Jack the opportunity to practice his craft. Prior to the race each NF Hero gets to sign the #4 Children’s Tumor Foundation car and sit in the drivers seat for a photo op. The event draws a large media gathering with reporters and t.v. news crews wanting to get in on the action. Jack felt the experience was just like being a movie star, “there was nothing around me but cameras,” he said.

The Foundation is hopeful that he won’t be too busy to join us at the track again next year.

Video: Prosthetic Leg Helps Melisa Callison RuNFor a Reason

Holiday Newsletter

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Racing4Research Car at the Short Hills Mall

A model of the Children’s Tumor Foundation race car competing in the Rolex 24 at Daytona has been touring Connecticut, New York and New Jersey (click here to see photos from the various events), and has made its final stop at the Short Hills Mall in Short Hills, NJ for the holiday season. The promotional car is a tribute to our NF Heroes in the tri-state area as well as a way to help raise NF awareness. The Foundation wanted to share the experience of Racing4Research with our NF Heroes who do not get the chance to travel to Daytona for the actual event by putting their names on the car and giving them the opportunity to see it in person.

“The NF Heroes are the heart of the program and the inspiration for the work we do,” said George Orfanakos, executive director of the Children’s Tumor Foundation, “Despite the challenges our Heroes face they persevere, and this program captures that spirit.”

The R4R promotional car arrived at Neiman Marcus Short Hills on Saturday, November 27, and was greeted by NF Heroes, their families and NY Jets football players Nick Folk and Tanner Purdum. If you missed the chance to see the Racing4Research car, you still have an opportunity. The R4R promotional car will be at the Short Hills Mall located on the first level in front of Brooks Brothers between department stores Saks Fifth Avenue and Bloomingdale’s.

Special thanks to Paul Miller for donating the use of the car and making this initiative such a success. Special thanks as well to Neiman Marcus Short Hills and the Short Hills Mall for their help in promoting our mission.

If you have any questions, please contact Athina Moustakis at 212-344-6633 ext 228 or at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

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