Today on the blog, we’re talking with long-time St. Baldrick’s supporter Dr. Len Mattano, whose career in the field has included pediatric oncology and pharmaceutical research. His novel is called Celtic Crossing, and he recently discussed his writing and his life’s work in pediatric cancer with St. Baldrick’s Foundation CEO Kathleen Ruddy.
“I have always been artistic in my life and creativity is very important to me,” says Dr. Anne Rios, recipient of the prestigious St. Baldrick’s Robert J. Arceci Innovation Award, who leads a research team and runs the Imaging Center at the Princess Maxima Center of pediatric oncology in Utrecht, the Netherlands. “So, when I started my scientific career, I wanted to combine both art and science to visualise the behaviour of cells in physiological condition but also during cancer.”
Kids with cancer and their families are in a constant state of worry. While we can’t always ease those burdens, we can prevent them from worrying about whether their lifesaving medication will be available. We must do more to prevent drug shortages.
Over the past decade, pediatric cancer drug shortages have become more and more common. The most recent is a widely used chemotherapy drug called Vincristine. Vincristine is a sterile generic injectable that has been approved to treat children with cancer for over 5 decades. It is utilized by nearly every child with cancer and is a critical component of treatment regimens for children with leukemias, lymphoma, brain tumors, bone tumors, neuroblastoma, Wilms tumor, and rhabdomyosarcoma.
Doctors and families are particularly concerned about the Vincristine shortage because there is no alternative or recommended substitute for the drug. Given the lack of a comparable replacement, doctors will be forced to ration the drug by either skipping or lowering doses. The shortage is already causing pediatric oncologists to alter clinical trial treatment protocols and even delay trial enrollments.
For years, Vincristine was manufactured by both Teva Pharmaceuticals and Pfizer. In July, Teva notified the Food and Drug Administration (FDA) that they planned to discontinue the drug leaving a single manufacturer responsible for the entire U.S. supply. Pfizer has encountered a manufacturing delay but is working to produce additional shipments to try to address the shortfall. Pfizer recently notified the FDA that they hope to rectify the problem by the end of October, but that there may be significant supply problems that could last until the end of the year.
St. Baldrick’s is committed to helping solve the childhood cancer drug shortage crisis. We are already working with our champions on Capitol Hill on longer-term solutions and continue to work with the broader childhood cancer community on advocacy solutions to encourage the government to do more to guarantee safe, uninterrupted and sufficient cancer drug supplies for children in the United States.
For any family that is currently having difficulty obtaining vincristine for your child, the FDA recommends that you contact them at drugshortages@fda.hhs.gov.
Read the letter from Dr. Peter Adamson, Chair of the Children’s Oncology Group, to the childhood cancer community on steps to resolve the shortage.
“I’m an accidental tourist in the childhood cancer world,” says Patrick Sullivan, who chairs the Patient Advocacy committee for the St. Baldrick’s Foundation — Stand Up 2 Cancer Pediatric Cancer Dream Team. “It’s not a place I’d ever thought I’d be in, until I heard that my son had rhabdomyosarcoma in 2007.”
Patrick’s role is more than just tourist, though. When the Pediatric Cancer Dream Team was created, its goal was to push the envelope, to marry the emerging fields of genomics and immunotherapy to create targeted therapies for cancers. It was also important to the Dream Team to involve patient advocates, to inspire and work alongside the researchers, to maximize the Dream Team’s success. Along the way, each researcher was paired with a young investigator on the team, to help the advocates better understand the science and to help the young investigators better communicate their work to families and the lay public.
If you had the chance to WIN the ultimate getaway while supporting an amazing cause – like funding childhood cancer research – would you do what it takes? It’s that time of year when the temperatures begin to drop, and your mind starts to drift to dream vacation destinations – that’s where we come in! St. Baldrick’s is back at it, running our 4th annual sweepstakes for participants who register and fundraise early.
Don’t miss out on your chance to win a once in a lifetime vacation while helping #DFYchildhoodCancers. Register now.
Meet Brian Christopher – he joins past sweepstakes winners Jim Varagona (2017, Disney Cruise) and Mark Silvius (2018, Tahiti) as the 2019 sweepstakes winner.
It’s October again, which means kids across the country will be gearing up for another exciting Halloween. But did you know that October is also the month when many organizations help their employees with charitable donations?
That’s right – within many company cultures, October is known as “Employee Giving Month”. It’s a great way to generate more revenue for your favorite charity – like the St. Baldrick’s Foundation!
This October, ask your employer for more information about some of the following popular fundraising options – it could make the difference in helping fund vital clinical trials investigating childhood cancers.
Since 2016 Universal Property and Casualty Insurance Company has raised nearly $1 million for lifesaving childhood cancer research. Each year they host their annual, company-wide, head-shaving event to #DFYchildhoodCancers in support of St. Baldrick’s.
Happy October! Fall is here, harvest season is upon us and Halloween is creeping around the corner. It’s the perfect time to help kids with cancer. Check out these 10 creative ways to fund childhood cancer research while the leaves are falling.
Who loved fall? 2014 Ambassador Alan, that’s who! His favorite holiday was Halloween, because he liked walking around his neighborhood and trick-or-treating. What can you do to help kids with cancer during Alan’s favorite time of year? Read on to find out!
When the St. Baldrick’s Foundation — Stand Up 2 Cancer Pediatric Cancer Dream Team was created in 2013, the idea was to pursue breakthroughs, specifically in the area of immunotherapy enabled by the application of modern genomic technologies. Now, with St. Baldrick’s as the primary funder and each member institution also investing financially — the Dream Team looks to build on the tremendous momentum in immunotherapy for childhood cancers.
Did you know that every two minutes a child is diagnosed with cancer? That means 25,000 kids around the world will hear the words “you have cancer” this month alone.
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