Danielle Leach, our Director of Government Relations and Advocacy, received an exciting invitation last month — she was asked to speak to the House Appropriations Committee. Step into her shoes as she recounts her experience testifying to Congress about childhood cancer and the need for research funding.
Danielle testifies to Congress about childhood cancer.
Pediatric pathologist Dr. Erin Rudzinski is looking at rhabdomysarcoma on a molecular level, but her research has big implications for kids with this cancer. Read on to learn how this St. Baldrick’s researcher at Seattle Children’s Hospital is helping kids with cancer get the treatment they need.
These are images of classic alveolar rhabdomyosarcoma (right) and embryonal rhabdomyosarcoma (left).
Do something to help cure childhood cancer.Aiden was the type of kid who lit up a room — friendly, smart, athletic, and caring.
As a baby, we marveled at how quickly he spoke. As he grew, he was kind to his friends and often stuck up for a peer who was being picked on. He played every sport, and although never the star player, he enjoyed team camaraderie (sometimes even with the other team as he made small talk with the kid on first base instead of watching the play).
In July 2008, Aiden was diagnosed with stage 4 rhabdomyosarcoma. This insidious cancer of the soft tissue was inoperable and located in Aiden’s pelvis. It had already spread to his lungs at the time of diagnosis.
Bob shares his best (and worst) ideas for a great head-shaving event.
St. Baldrick’s VEO Bob GaNun talks to a young shavee at his Floral Park event, which has raised over $1 million for pediatric cancer research.
It seemed like a good idea at first. “I thought, we’ll kick the beach balls around…it will be like a concert,” Bob said. But once they got the beach balls on the stage, things got hairy. “There was hair floating all over the place, hair sticking to the beach balls. Everybody popped them. But it was funny.”
Fun is what Bob brings to his St. Baldrick’s event year after year, and it works. Since 2009, his event at the Trinity Bar and Restaurant in Floral Park, New York, has raised over $1 million for children’s cancer research.
Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).The Dream Team, funded by Stand Up 2 Cancer and the St. Baldrick’s Foundation, aims to establish genomics-based immunotherapy as the second revolution in childhood cancer. The following is adapted from the Dream Team’s own summary of its proposal.
Curative chemotherapy for cancer was first realized in children. Survival rates for many of the common cancers in children improved dramatically through the last part of the 20th century. However, those cure rates have plateaued since the 1990s, and for some childhood cancers, we have seen little to no improvements.
Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).I wish you could have been with us in the room when the first pediatric cancer Dream Team was announced, to be funded by the partnership of the St. Baldrick’s Foundation and Stand Up To Cancer (SU2C).
From a long list of innovative “big ideas,” the scientific reviewers representing both funding organizations had chosen the top four to submit detailed proposals. The experts agreed that any of these would be great investments, but for a grant of $14.5 million over four years, only one could be chosen.
The suspense ended with an enthusiastic round of applause when the winning Dream Team was announced at a reception tonight at the annual meeting of the American Association of Cancer Research (AACR). The evening’s emcee was actor Kyle MacLachlan, and speakers included Nobel Laureate Dr. Philip Sharp, St. Baldrick’s CEO Kathleen Ruddy, and 10-year-old cancer survivor Emma W. and her parents.
And the award goes to:
Diagnosed with stage 4 embryonal rhabdomyosarcoma, cancer of the connective tissues, just five days after his third birthday, Luke endured 70 weeks of treatment – multiple rounds of chemotherapy, six weeks of daily radiation and many central line infections. “The amazing part is that Luke never said no to us. Not once, not ever,” his mom, Monica, recalls. He just fought the cancer. Now, two years off-treatment, he remains cancer free.
When he was 16, Jordan was diagnosed with a very aggressive soft-tissue sarcoma. The doctor said, “We have your diagnosis. It’s alveolar rhabdomyosarcoma, and you will most likely not survive.” Jordan responded with strength and a sense of calm. He was the very definition of grace, courage and strength. After 23 months of treatment, Jordan passed away five days before his 18th birthday.
When Gianna was born, I felt like a missing piece had found its place, our family was complete. Gianna joined her two older siblings, Samantha and Derek Jr., and for the first 16 months, our lives were chaotic, fun-filled, exhausting, and exciting – there was never a dull moment.
I can close my eyes and vividly remember last Halloween. The kids’ costumes, the candy, the cool fall air and Gia on my hip in her favorite kitty cat costume. She ran a fever of 101 that night, but nothing else seemed to be wrong.
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