Collaboration to Cure Medulloblastoma

 

Editor’s Note: In recognition of Brain Cancer Awareness Month, we are publishing an article that was reported in the April 24, 2019 ASCO Daily News. It highlights the massive collaborative efforts by private foundations such as the Carson Leslie Foundation and others to promote research in all types of childhood brain and CNS cancers. Private foundation funding and collaboration will be the key to finding cures in the future.

Carson Leslie was a kind, popular, full-of-life teen who loved sports and spending time with his family and friends. He was a devoted student at the Covenant School, in Dallas, where he was quarterback on the football team, and an active member of Grace Bible Church. He shared a special bond with his older brother Craig, and the two were inseparable. He was “an indominable spirit from early on as a little boy” and “the kid everyone wanted to hang out with on Friday nights,” reminisced his mother, Annette Leslie.

When Carson was 14, he experienced a cascade of symptoms that initially perplexed his physicians but ultimately led to the diagnosis of medulloblastoma. He underwent treatment for 3 years until the family was told there was nothing further that could be done. He died of the disease at the age of 17, in early 2010.

Throughout his years of treatment, Carson kept a journal, which eventually became a book, Carry Me, published 6 days before his death. The book provides a glimpse of what it is like to fight a life-threatening disease as a teenager. He wrote, “I have written a book to give a voice to the teenagers and children who have cancer but are unable to express how such an illness affects their personal, social, physical, and emotional life … I wish to make a difference, and I know others my age want to do the same.”

“Carson was a giver at heart,” Ms. Leslie said. When it became clear that he would not survive the disease, he told his parents to “make sure they study those tumors in my brain, because if those tumors can help some kid someday not die from cancer like I am, I’d like that; it’s hard to have cancer.” His family honored his request, donating tumor samples that were used for mouse models. This was only the beginning of the contributions from Carson and his family.

In 2010, the family launched the Carson Leslie Foundation as the only nonprofit organization in the United States with a focus on finding a cure for medulloblastoma. “Medulloblastoma is the most prevalent of children’s brain cancers, and brain cancer is the deadliest of children’s cancers,” Ms. Leslie said.

Through a collaboration with the Cancer Prevention and Research Institute of Texas, the Carson Leslie Foundation supported the Carson Leslie Awards for Pediatric Brain Cancers totaling $3.2 million for research programs at University of Texas Southwestern Medical Center, Baylor College of Medicine, and Texas Tech University Health Sciences Center. The Carson Leslie Foundation established a #cureMEdullo initiative to further propel its research support. One of the first efforts as part of this initiative was supporting a Conquer Cancer Foundation of ASCO/#cureMEdullo Young Investigator Award in Medulloblastoma Research powered by the Carson Leslie Foundation.

“It is an honor to partner with ASCO and Conquer Cancer by investing in a Young Investigator Award,” Ms. Leslie said. “We have great hope a young, eager, open mind will unlock secrets hidden in the complexity of medulloblastoma and bring less-toxic treatment to this awful disease with an ultimate goal: a cure.”

Gerald J. McDougall, a Conquer Cancer board member and the chair of the Carson Leslie Foundation board, said, “The joining of forces between our organizations represents our synergistic commitment to advancing research in medulloblastoma and ensuring a cadre of investigators focused on this important area. Based on my decades of working with leading cancer organizations, leveraging ASCO infrastructure by supporting the Conquer Cancer Young Investigator Award program makes sense for these organizations.”

Walter M. Capone, MBA, a Carson Leslie Foundation board member and director of its #cureMEdullo initiative, said, “Since inception, #cureMEdullo/the Carson Leslie Foundation’s singular focus has been to accelerate the most promising science and therapeutic advances in our pursuit of cures for children fighting medulloblastoma. The Conquer Cancer Foundation’s mission is exquisitely aligned with Carson Leslie’s, and we are deeply gratified to partner with such a powerful organization on this ambitious journey.”

The Carson Leslie Foundation’s work is not limited to research. Because Carson had cancer for most of his teenage years, the family saw first-hand a need to fill a void in services and activities geared to patients with cancer in this age group. “When Carson was an inpatient, he never left his room,” Ms. Leslie said. “The playroom was full of ‘loud little kids,’ and those were very lonely days for him. So, we built the teen room, we affectionately named ‘ ,’ on the oncology floor at Children’s Health, Dallas, where he was treated.”

Ms. Leslie further recalled, “When Carson was diagnosed, we arrived at the ER with nothing, so we now provide Under Armour backpacks for [teens who are] newly diagnosed or relapsed [that are] full of items that might come in handy during long hospital stays. We are thrilled to have a partnership with the Jordan Spieth Family Foundation to expand our backpack project to additional hospitals.”

“We are honored to work with the Carson Leslie Foundation to make progress against medulloblastoma,” said Nancy R. Daly, MS, MPH, chief philanthropic officer for Conquer Cancer. “The Leslie family’s commitment will make a tremendous impact and bring hope to other children and families suffering from this disease.”

Author Joe Baber

 

This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

2 Responses to Collaboration to Cure Medulloblastoma

  1. andreadahlberg says:

    Always love your articles. Do you know if they’re also working with Dr. Robert Wechsler-Reya at SBP?

    Andrea Dahlberg La Jolla Art & Wine Festival 2 Pints Marketing acdahlberg@yahoo.com 858-775-9059

    • Team Captain says:

      From Annette Leslie: “We do not know him but would like to meet him if he plans to attend ASCO. We are eager to fund our ASCO Young Investigator Award in medulloblastoma – ASCO is actively working to identify an individual focused on medulloblastoma.

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