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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.

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.

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?”

Behind-the-Scenes: To Recognize an NF Hero, Decals to Podium in 48 Hours

on Wednesday, 19 August 2015. Posted in R4R News Blog, Blog

By Jill Beck, Racing4Research Program Director

ImWithDrew R4R collage 200wOur Racing4Research program recently visited Wisconsin for IMSA’s Continental Tire Road Race Showcase weekend. I traveled to Road America with a heavy heart, having just learned that we were on the verge of losing another NF Hero: 28-year-old Drew Leathers, 2012 CTF Ambassador, the inspiration for Cupid’s Undie Run, and someone I consider to be family.

Drew's battle with schwannomatosis has been nothing short of heroic - the challenges he has overcome are mind-blowing - yet he's always accepted each challenge with a sly smile and brutally funny irreverence. In typical Drew form, he decided to have a party to celebrate his life while he was alive and host a “FUN-eral" at his family’s home, which happened to be the same day as our Racing4Research event at Road America.

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