Just mentioning herpes might make some people a little nervous, but in this story, herpes is the good guy. Read on for more about St. Baldrick’s Scholar Dr. Gregory Friedman’s work on a genetically altered version of the virus that could be the next targeted therapy for kids with brain tumors.
BREAKING NEWS: An innovative therapeutic tool developed by Dr. Friedman has proven to be safe in kids with high-grade gliomas, according to recently released clinical trial findings. Crafted from the herpes virus that causes cold sores, the genetically modified virus has already shown promise in killing cancer cells and stimulating the immune system to attack the brain tumor – with one patient still showing progress more than a year after treatment! In the next phase of research, Dr. Friedman will study how safe the viral tool is when combined with one low dose of radiation, which is expected to boost the immune system and help the virus replicate.
Dr. Friedman smiles with a young patient in an exam room at Children’s of Alabama.
St. Baldrick’s Scholar Dr. Gregory Friedman discovered that the herpes simplex virus, with a few modifications, will kill pediatric brain cancer cells — without causing cold sores.
Back in April, Ambassador Zach was finally healthy enough after his bone marrow transplant to go out in public. What did he decide to do after that momentous milestone? He joined the hundreds of advocates speaking up for kids’ cancer research on Capitol Hill during Childhood Cancer Action Days. Here’s his recap of that trip and the big moments that have come since …
Ambassador Zach poses for a photo in front of the United States Capitol building and its famous dome during Childhood Cancer Action Days in April.
I received a bone marrow transplant over a year ago, and I was so glad that I was healthy enough to speak on Capitol Hill this past April as a St. Baldrick’s ambassador. As an ambassador, I am a face and a voice for childhood cancer, and while in Washington, D.C., my family and I represented thousands of children and families who are affected by childhood cancer. I was lucky enough to share my story and talk about the importance of funding childhood cancer research through the STAR (the Survivorship, Treatment, Access and Research) Act, the most comprehensive childhood cancer legislation ever taken up by Congress. With the recent passage of the STAR Act, we have come so far, but we still have so far to go.
Today is the first day of National Cancer Survivors Month. To kick it off, 2014 Ambassador Lauren shares what survivorship means to her and gives us a peek into what life is like as a childhood cancer survivor.
Diagnosed at age 14 while still in high school, Lauren is now 20 years old and is pursuing her dream of becoming a pediatric oncologist, so she can devote her career to both to the treatment of kids with cancer and to the research to find cures.
June 7th, 2012 is a day that will forever be etched into my memory. This was the last day of my freshman year of high school, but also the day my life was forever changed. After eating dinner, my mother began shaking in her seat as my stepfather informed me that the tumor that had been removed from my abdomen was malignant and so were the surrounding lymph nodes. I had stage 4 neuroblastoma.
From its inaugural Phase 1 clinical trial through its successful Phase 2 trial, we have traced the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia and few options, like Honored Kids Austin and Ori. (Read the whole series here.) Now, with a historic decision made in August, we are at the end of our story, but not at the end of the story of Kymriah. Instead, Kymriah’s is just beginning – and starting a new chapter of hope for kids with cancer.
Austin (left) and Ori (right) are both alive today thanks to Kymriah and their participation in the Phase 1 and Phase 2 trials.
On August 30, 2017, big news rippled through the childhood cancer community. On that late summer day – before the start of Childhood Cancer Awareness Month – the FDA made a historic move that changed the landscape of childhood cancer research forever.
Over a series of four blogs — catch up with parts one and two about the Phase 1 trial — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Ori.
After relapsing for the second time and with his cancer spreading to his nervous system, Ori’s best chance at life was a Phase 2 trial of this experimental CAR T cell therapy. With a sunny attitude and staggering strength of spirit, Ori gave this new treatment a shot – with astonishing results.
Ori was in cancer treatment for much of his young life and throughout the journey, his strength and positive attitude have been remarkable. “He has been through so much, but has done it all with a great attitude and a smile on his face,” said his mom, Kaye.
When a child with cancer relapses the first time, their treatment options shrink. But when a child with cancer relapses again, their options and chances at survival don’t just shrink – they’re nearly extinguished. That is what happened to Ori.
2017 was a big year, full of breakthroughs, incredible stories and some pretty amazing achievements in the childhood cancer world. Join us as we reflect on St. Baldrick’s top 10 highlights of the past year — and make sure you give yourself a pat on the back, because much of this was possible because of YOU!
Are you ready to take a trip down memory lane? Here we go …
1) Passage of the RACE Act
Zach is a cancer warrior. He is courageous, strong and has fought cancer three times.
Diagnosed when he was 6 years old, Zach beat cancer for the first time after nearly four years of treatment. Then, at age 11, he knew it was back. Zach powered through almost three more years of treatment with a positive attitude.
If you’re like me, you often have to remind yourself to slow down and appreciate the here and now. It seems everything in modern life encourages us to focus on tomorrow. Stores promote Christmas shopping while children select Halloween costumes, and those same children spend their childhoods awaiting summer vacation or anticipating their next school year.
During the holiday season, St. Baldrick’s CEO Kathleen Ruddy likes to reflect on the blessings of the past year.
Sometimes I feel I’m wishing my life away, which is why I appreciate the season from Thanksgiving to New Year’s Day so much. It’s one of the few times we officially take stock of our blessings, treasure our time with those we love, and encourage each other to reflect upon the past year.
Usually, I’m most grateful for the things that are new, like the approval of Kymriah, a CAR T cell therapy for kids with a particular type of acute lymphoblastic leukemia (ALL) and the first gene therapy approved in the United States. Given to children with few or even no treatment options for their cancer, this St. Baldrick’s-supported therapy is effective in 83% of the children who receive it – children who can now celebrate the holidays and the promise of a future thanks to research supported by St. Baldrick’s.
You helped save a child’s life. Meet Honored Kid Ori. He is in remission, because of a research breakthrough supported by St. Baldrick’s – and generous donors like you. Read on to learn more about this amazing kid and why he and his family are thankful for YOU.
Ori amazed his parents with his strength and positive attitude, even after years of treatment.
When Ori’s parents were packing to go to the hospital for the first visit – the first of many – they told the 2-year-old boy that they were going on an adventure.
And that’s how both he and his family have viewed his cancer journey ever since.
Over a series of four blogs — read the first blog here — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Austin. This 9-year-old pioneer was one of the first patients to receive this revolutionary type of CAR T cell therapy, which was made possible because of the hard work of the St. Baldrick’s – Stand Up To Cancer Dream Team.
Continuing from Part One, Austin’s bone marrow transplant has failed and we find his parents at a dead end in terms of treatment options — until a ray of light appears.
During his treatment, Austin always just wanted to be a kid. After finishing a chemotherapy and radiation treatment, he’d often joyfully run out to his backyard to play on the swings.
The options were few and the stakes were huge, but the choice was clear for Austin’s parents. With their 4-year-old son months away from death, they had to choose hope – hope in the form of a clinical trial testing a promising gene therapy called Kymriah.
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