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Dancing Toward a Brighter Future for People with a Genetic Disorder

on Tuesday, 01 September 2015. Posted in Foundation News & Events, Blog

Local celebrities participate in the 'Dancing with Our Stars' annual event to help end neurofibromatosis

dwos red carpet 2015LITTLE ROCK, AR -- After months of rehearsals, local celebrities will demonstrate their dance moves at the eighth annual Red Carpet for Research event "Dancing with Our Stars," on Thursday, September 10, 2015. Hosted by the Arkansas Chapter of the Children's Tumor Foundation, the evening will take place at the Little Rock Marriott Ballroom in Little Rock, Arkansas and will raise money for the Children's Tumor Foundation, a nonprofit organization that funds research into neurofibromatosis, a genetic disorder that affects one in 3,000 people. The evening will include pictures on the red carpet, a reception, a seated dinner, and dancing.

NF Hero and Author Ella Mozzarella presents check to CTF staff

on Friday, 28 August 2015. Posted in Blog

P1010737 smElla Wilson, who goes by the pen name Ella Mozzarella, NF Hero and author of I Sold My Sister stopped by the CTF national office this morning to present a check for $654! 

I Sold My Sister is an original story of what it's like to have a new sister, told from the perspective of a 5-year-old. The vivid artwork captures the author's feelings as she learns to accept the changes in her life and come around to love and adore her little sister.

Wall Street Journal: Drug Trials Scramble for Patients

on Friday, 28 August 2015. Posted in Blog

wsj screengrab smThe Wall Street Journal recently published an article (read it here) about the struggle of enrolling patients in drug trials for rare diseases – by the very nature of being a rare disease, drug trials recruit from the same – limited – pool of patients, who must meet very particular qualifications.

Remembering Drew Leathers

on Tuesday, 25 August 2015. Posted in Blog

Drew gala 133wIt is with heavy hearts that we share the news that Drew Leathers, Children’s Tumor Foundation Ambassador and inspiration behind Cupid’s Undie Run, passed away last night. While this is something we've known was coming, it still comes with a strong feeling of disbelief that this vibrant, intelligent, inspirational young man has left us. From the day he was diagnosed with NF, to his final days, Drew led by example – with courage, resilience and in characteristic Drew style - a healthy sense of humor about the reality he faced. He touched so many lives, both within the NF community and in the world at large, and he will be tremendously missed.

Pres. Annette Bakker to speak at Stanford University with Sage Bionetworks in September

on Monday, 24 August 2015. Posted in Blog

Stanford Univ Sage Bionetworks Poster 154wOn September 19, 2015, Annette Bakker, PhD, President and Chief Scientific Officer, will speak at a one-day conference hosted by the Program in Human Biology at Stanford University in association with Sage Bionetworks, our partner in the Synodos consortia. The presentations will cover delivering health to hard-to-serve populations; rare/orphan diseases; and health, education, patient data, and advocacy. Dr. Bakker will address the question, “Are we ready for the changes that we need to implement in order to find effective treatments for orphan diseases?”

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