Early in the morning on June 8, the world lost a cancer research pioneer, thought leader and a kind, beloved humanitarian.Dr. Robert Arceci, a member of the St. Baldrick’s Foundation board of directors and chair of our Scientific Advisory Committee, was killed by a hit and run driver while on his way to work at Phoenix Children’s Hospital.
Most people feel that when it’s their time, they want to go doing something they love. For Bob, he was riding the motorcycle he loved, to the work he loved.
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The official Guinness World Record certificate awarded to barber David Alexander on behalf of the St. Baldrick’s Foundation.
David Alexander, a long-time St. Baldrick’s leader and barber, set a Guinness World Record by shaving the most heads in one hour — 73 — on the Today Show. David was ready for this day; he organized a test shave to prepare for the official Guinness World Record challenge. And he’s no stranger to St. Baldrick’s; he has personally raised over $674,000 for lifesaving childhood cancer research and has the St. Baldrick’s logo tattooed over his heart!
David is one of many extraordinary people who we’re so privileged to know. More than 80 volunteers joined him on the Today Show set. They came to midtown Manhattan from throughout the tri-state area, arriving at the crack of dawn to experience one of the fastest shaves, all for one reason — to put a spotlight on kids with cancer, their fight, and the St. Baldrick’s Foundation’s mission to give all kids with cancer long and healthy lives.
The kids we all fight for are the greatest heroes we’ll ever know. But I’ve always believed that the kids inspire the best, from the best people, and the St. Baldrick’s community proved that again today.
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Dear Kamryn and Delaney,
Yesterday we learned that you, Kamryn, were suspended from school for shaving your head. You did so in solidarity with your friend, 11-year-old Delaney Clements, a St. Baldrick’s Honored Kid — and a cancer-fighting hero.
Kamryn, every member of the worldwide St. Baldrick’s community is cheering for you today. Delaney didn’t ask to have cancer and lose her hair. But you chose to lose your hair to show Delaney how much you love her, and bald looks very beautiful on both of you.
In many businesses, success is measured by statistics, and mine is no different.
Heads shaved, money raised, media impressions, research grants funded, and more — all meant to improve the most important statistic of all: The number of kids with cancer who survive.
But kids aren’t statistics, and they aren’t “business.” Unlike hair, each child is irreplaceable.
As I stood, frozen in place before my closet, I again asked myself, “What does one wear to a child’s funeral?”
I thought about the young man whose life we would celebrate, and chose purple, the color of half-mourning. It seemed right. Half of me is mad as hell that this beautiful soul has departed this life. My other half rejoices that Justin Miller is no longer suffering, and is now at peace. I am grateful Justin was sent to better us. It has been said that only the good die young, and this is certainly true of this ninja.
My best Christmas gift was delivered two weeks early. Our young Ambassador, Justin, left the hospital in time to participate in his school’s Winter Concert.
As Justin and his classmates sang, I thought about how he has miraculously fought cancer seven times, and how those miracles were possible because of another one.
Many members of the childhood cancer community are aware of daunorubicin, a chemotherapy drug that is used to slow or stop the growth of cancer cells. This generic sterile injectable drug is a first-line treatment for childhood acute myeloid leukemia (AML), and is also used in treatments for some types of acute lymphoblastic leukemia (ALL), the most common type of childhood cancer.
Teva Pharmaceuticals — the only distributor of daunorubicin in the United States — informed the U.S. Food and Drug Administration (FDA) that the drug is in short supply, and full production is not expected to resume until sometime next year. The company offered no explanation for the shortage and gave no specific timeline for restoring the drug to full production.
St. Baldrick’s Chairman Chuck Chamness, left, presents a platter to Chairman Emeritus John Bender in recognition of John’s three years of service as board chair.
As Chuck handed the platter to John and the two of them smiled for the camera, I thought about how much John Bender and his family have meant to St. Baldrick’s over the years.
As one of the three founders who began the event on St. Patrick’s Day in 2000, John and his bald head will forever live in St. Baldrick’s history. But that was just the start.
The government shutdown is impacting children with cancer. House and Senate members continue to debate while children with cancer, their families, and the researchers wait. Photo: Rachel Kemble Photography
The government shutdown may delay the opening of new clinical research studies funded by the National Cancer Institute (NCI), including studies being developed by the Children’s Oncology Group (COG), a cooperative network of more than 200 research institutions.
A short-term government shutdown is not expected to impact ongoing clinical trials, except potentially trials conducted at the NIH’s Clinical Center in Bethesda, Maryland.
Luck. When I was a kid, luck was about beating my brothers in a game of cards, getting the cereal box toy in my bowl, or getting the last ticket to a new movie. I didn’t know that I was lucky to simply be healthy; it didn’t cross my mind. I wore my innocence like a shield, believing my parents’ love and a kiss could heal anything.
We weren’t forced to live under a dark cloud, worrying every minute that cancer would spread, or reappear later, or that treatment would disable us, or worse, take one of us.
My family’s good health wasn’t the result of our parents doing anything different from any other parents. Our genes simply behaved.
Why were we so lucky when others were not?
I ask myself this a hundred times a day, but as science doesn’t yet know the answer, I pay it forward by finding a cure — not in a laboratory, but by using my own strengths and abilities to work for a cure. The fact that I can help conquer childhood cancers isn’t unusual. Everyone can.
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