Imagine being born with an oversized tongue that makes breathing and eating a constant chore. Imagine starting life with an oversized pancreas that pumps an excessive amount of insulin, creating a wide range of unexpected health issues.
In fact, try to imagine being born with an abnormally large organ of any kind – tongue, liver, kidneys – and how this might affect your life.
Children with Beckwith-Wiedemann syndrome, otherwise known as BWS, live with these challenges every day. And it’s not the only health concern they face.
They’re also at a much higher risk of developing childhood cancer.
Honored Kid Micah is ready for his close-up during a hospital stay in 2015, when he was taking part in a St. Baldrick’s-funded clinical trial at Children’s Hospital of Los Angeles (CHLA) for neuroblastoma, a type of childhood cancer.
For kids with cancer and their families, clinical trials mean hope. Clinical trials offer a chance for survival when all other options are exhausted. They offer kids in treatment and survivors the possibility of a better future with fewer side effects. Most of all, for all kids with cancer today and in the future, clinical trials help scientists get closer to cures.
With your help, St. Baldrick’s has been an essential part of this lifesaving research phase since 2005 — every St. Baldrick’s donor has helped make these trials possible for more than 100,000 children with cancer.
Honored Kid Madelyn was diagnosed with DIPG in 2010. A fashionista with a big spirit and an equally big heart, Maddy was an inspiration to those around her. She passed away in November 2011 after an 18-month battle with DIPG.
No child has ever survived a diffuse intrinsic pontine glioma brain tumor, commonly called DIPG.
This aggressive pediatric brain cancer multiplies in the brainstem, which controls some of our most basic functions for living – our breathing, heart rate, blood pressure and ability to swallow and speak. And because the cancer is so intertwined with its delicate surroundings, DIPG is often inoperable.
A DIPG diagnosis and a zero percent survival rate has remained the reality for kids and families for decades.
But what if there might be hope? What if that hope came from within the child’s own body?
Honored Kid Micah shows off his dance moves as his dad, Jeff, looks on.
I’m sitting in the waiting area of a hospital 100 miles from home to get the results of my 7-year-old son’s latest MRI scan. Strange to think of myself as one of the lucky ones, but in this club that no one wants to join, I am lucky. My son Micah is now celebrating four years with no evidence of disease, after being diagnosed with an aggressive form of cancer when he was just a toddler. But that good fortune didn’t come out of nowhere. We are lucky because Micah had treatment options – options made possible by St. Baldrick’s Foundation donors like you. Now I need your help to make sure that every child with cancer has as many options as my son Micah had.
New St. Baldrick’s researcher Dr. Rintaro Hashizume in the lab at Northwestern University.
For a child diagnosed with an atypical teratoid rhabdoid tumor or AT/RT, the options for treatment can be sparse and survival uncertain. This rare, aggressive tumor generally strikes very young kids and though research has progressed, many of these kids live less than a year after diagnosis.
As the father of a kindergartener, this breaks Dr. Rintaro Hashizume’s heart.
Recently awarded a St. Baldrick’s Research grant, Dr. Hashizume wants to change that reality for kids with AT/RT and their families.
It’s a safe bet that when a group of prominent cancer researchers get together to share news about progress, researchers supported by St. Baldrick’s donors will be among them. This was true of the June 2018 annual meeting of the American Society of Clinical Oncology (ASCO), the largest gathering of cancer professionals in the world. This year, St. Baldrick’s was a prominent part of this significant event. Read on to learn more …
St. Baldrick’s Senior Director of Advocacy and Government Relations, Danielle Leach, speaks during the presentation of the Partners in Progress Award at the ASCO conference. Photo by © ASCO/Matt Herp 2018
An ASCO meeting is like a city within a city, with more than 32,000 professionals attending, from patient advocates to academic researchers to biotech movers and shakers. Each year, the news announced at this meeting has far-reaching implications for the future of research, outcomes for patients, and even stock prices of companies involved in new advances.
For some kids with cancer, getting a bone marrow transplant can be a blessing, but for others it can be a curse. That’s because of a complication called Graft-Versus-Host Disease or GVHD, which not only causes immense suffering — it can also be fatal. Enter Dr. Melissa Mavers, a St. Baldrick’s Fellow who aims to stop GVHD in its tracks and help kids with cancer live long, healthy lives after transplant.
Dr. Melissa Mavers works in the lab at Stanford University Hospital. A St. Baldrick’s Fellow, Dr. Mavers is an instructor of pediatrics in the Division of Stem Cell Transplantation and Regenerative Medicine at Stanford University.
For a kid with cancer and their family, a bone marrow transplant can mean a clean slate and a new beginning. But it’s not easy. The procedure involves intense, high-dose chemotherapy and sometimes radiation, which wipes out the kid’s bone marrow cells and immune system. This forces them to remain in isolation at the hospital, so they don’t get sick.
“The destroyed cells are then replaced with cells from a donor to not only help rebuild their defense systems and their ability to make blood but also to fight any last cancer cells that remain,” explained Dr. Mavers.
June is National Cancer Survivors Month and St. Baldrick’s is dedicated to funding research that saves more lives and helps more survivors! Thanks to donors like you, we’ve funded $17 million and counting in survivorship research grants, so kids with cancer can thrive after treatment ends. Take a peek at just a few of our grants that are making a big difference for childhood cancer survivors…
2014 Ambassador Lauren is a childhood cancer survivor and dreams of becoming a pediatric oncologist. She says she wouldn’t be here without childhood cancer research.
1. Dr. Jonathan Fish with the Feinstein Institute for Medical Research, St. Baldrick’s Scholar Grant
Dr. Jonathan Fish with the Feinstein Institute for Medical Research in Manhasset, New York.
Thanks to funding from the St. Baldrick’s Foundation, Dr. Fish and his colleagues were able to form the ‘Survivors Facing Forward’ program at New York’s Cohen Children’s Medical Center in 2008. Since the beginning of the St. Baldrick’s award, the program has grown to follow over 625 survivors and is now one of the top survivorship programs in the New York area. The program provides survivors with an array of services – from oncology to psychology, cardiology, fertility counseling and many more – that are coordinated to meet their unique needs and help them live full, healthy lives. In addition, the program has served as a powerful platform for research into the challenges faced by survivors, including iron overload, vascular resistance, adherence to screening recommendations and genomics.
St. Baldrick’s CEO Kathleen Ruddy has seen it all. From the years before the Foundation was officially established to today, she has watched St. Baldrick’s grow from a few passionate volunteers to become the largest private funder of childhood cancer research grants in the country. Now take a trip down memory lane with Kathleen, to where it all began.
A shavee is all smiles at the St. Baldrick’s Space Coast Conquers head-shaving event in Viera, Florida, which is one of thousands of events across the country and beyond.
18 years ago, St. Baldrick’s was a tiny group of passionate volunteers that aimed to do a big thing – conquer childhood cancers. The first event, established by the reinsurance industry in 2000, intended to raise $17,000 and raised $104,000 instead. Shavees scratched those newly shorn domes and said, ‘Maybe we should do this again!’
In 2001, these intrepid volunteers set forth to grow St. Baldrick’s throughout the U.S. for the following St. Patrick’s Day.
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
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