To find a cure for leukemia, lymphoma, Hodgkin disease, myeloma and allied cancers by means of awarding Discovery Grants to innovative developmental research projects; to conduct marrow donor drives.
Health professionals and clinical researchers
516-767-1418 http:\\www.lslf.org/index.shtmlA Brave Kid’s Guide to Leukemia by Nina Gonzalez, MD
Hello Brave Co, 2024, 49 Pages, Paperback
ISBN: 979-8990710511
Charlie is a curious kid facing a big challenge: leukemia. With so many questions swirling in his mind, Charlie finds a friend in Cobi, the super smart Brave Buddy who helps kids understand their medical diagnoses. Together, they set off on a journey of understanding, and Charlie realizes just how Brave he is.
A Brave Kid's Guide to Leukemia is designed to help children understand their leukemia diagnosis. Created by Dr. Nina Gonzalez and the Hello Brave team, this book breaks down complex medical information into simple, clear language and illustrations. Through an engaging conversation between Cobi and Charlie, this book helps to dispel common misconceptions and provides comfort through a shared understanding of this challenging diagnosis. At the end of the book, you'll find a glossary of easy-to-understand terms, guides for adults on how to talk about tough diagnoses like leukemia with kids, questions to ask your care team, and a Brave Kid Certificate to honor your child's bravery and strength. This book is a supportive tool for both patients and families dealing with leukemia.
For more information click here
Reviewed by Gwen Nichols, MD, EVP and Chief Medical Officer at The Leukemia & Lymphoma Society
On October 20, 1944, Robert “Robbie” Roesler de Villiers was only 16 years old when he died from leukemia. Robbie’s parents, Rudolph and Antoinette, were stricken with grief and frustrated by the lack of effective treatments for what was then considered a hopeless disease.
After five years of mourning their son, they started a fundraising and education organization in his name. The Robert Roesler de Villiers Foundation had only a few volunteers and a tiny budget.
Frank Meehan spent two decades spearheading the United Food & Commercial Workers’ (UFCW) effort to raise money to defeat blood cancers. As president of the Long Island, NY Local, he was one of the first leaders to act upon the union’s national relationship with The Leukemia & Lymphoma Society (LLS).
Then last spring, in a twist of fate, he ended up losing his life to one of the aggressive leukemias he’d been hoping to see cured.
In the treatment of children with acute myeloid leukemia “We have plateaued. The tools in our toolbox are all sledgehammers.”
This grim assessment was how Dr. E. Anders Kolb, of Nemours/Alfred I DuPont Hospital for Children, characterized the state of treatment for children with this devastating form of leukemia.
Dr. Kolb was among a group of pediatric oncologists to join The Leukemia & Lymphoma Society (LLS) in hosting an event in Atlanta this week to discuss LLS’s new $50 million Children’s Initiative, a multi-faceted effort to:
For the third consecutive year, during Blood Cancer Awareness Month, nearly 250 West Marine stores across the country are teaming up with The Leukemia & Lymphoma Society’s (LLS) Leukemia Cup Regatta, to raise awareness for the urgent need to fund research to advance cancer cures. From September 1-30, West Marine customers can donate to LLS by purchasing a paper sailboat they can add their name to and display in the store where the donation was made. 100% of the proceeds will go LLS to help support the fight against cancer.
Christopher Vakoc, M.D., Ph.D., leads a team of researchers being funded through LLS’s Career Development Program. At Cold Spring Harbor Laboratory in Long Island, N.Y., Vakoc works in an area of science called epigenetics – the study of chemical changes that switch genes on and off to control cell behavior.
What is epigenetics?
Epigenetics is arguably one of the fastest-moving fields of cancer research.
“Hola,” I said playfully, as I answered my cell phone on a beautiful Saturday -- April 21, 2012. “This is Dr. so and so. I’m calling because your blood work from yesterday is all out of whack.” “What do you mean, ‘Out of whack?’” “Your white blood cell count is high,” he said. “What’s high? “It's at 63,000.” “And what's it supposed to be?” “10,000.”
I am glad to be here. Literally.
Being a survivor is a good thing. I could have been six feet under, after being diagnosed with acute lymphoblastic leukemia (ALL) on December 16, 2000. I was 40 years old, raising two children with my husband Ron. Our daughter was almost 4 years old and our son was 16 months.
This is part of a periodic series of Q&A’s with LLS-funded researchers. Dr. Abdel-Wahab of Memorial Sloan Kettering Cancer Center focuses on an area of research called epigenetics – chemical modifications that regulate (switch on and off) gene activity. He is studying how these processes drive the development of acute myeloid leukemia and other blood cancers. He currently holds a Career Development Program grant from LLS, a program that supports scientists earlier in their careers.
Q. What is the focus of your research and its primary goal?
World Cancer Day is February 4, when people across the globe come together to work toward reducing the global burden of cancer. An integral part of this work is scientific research that leads to innovative treatments, ultimately saving lives.
Despite promising advances in treatment, cancers are among the leading cause of disease and deaths worldwide. Cancers know no boundaries, and have devastating impacts on families across the globe.
Diagnosed at birth with a rare leukemia, Eevie had a 17 percent chance of making it to age 2. Now 18 months old, she continues to defy the odds as she marks the same milestones as others her age. Her parents, Brynne and Ryan, report that she is all smiles and is a very happy (and thankfully ornery) little girl. Eevie was assessed and dismissed from physical therapy as she is "right on track." She is walking around the house, trying to put on Mommie's shoes, and is saying multiple words. Eevie loves to make animal noises (mainly the tiger, her inspirational mascot) and growls often!
A first birthday is always a big occasion, but for Eevie, it's taken on a whole new meaning. She was born with a rare leukemia that gives her a 17 percent chance of surviving to age 2. Even her parents weren't sure she would make it this far. "We didn't think she would still be here. The odds were never in her favor," said her mom, Brynne. Eevie was born with congenital acute lymphoblastic leukemia (ALL), an extremely rare condition affecting 1 in 5 million newborns.
Finding out you have blood cancer can bring on a whirlwind of emotions and a plethora of questions. No one expects to get such a diagnosis and there isn’t anything you can do to prepare.
Regardless of how you came to your diagnosis, most people report not having absorbed a lot of information after hearing the word “cancer." The vocabulary may seem like a foreign language, and the need for support can be tremendous.
Blood cancer survivors have a unique path ahead of them—and that can feel challenging.
Questions come up: Does treatment mean I have to pause everything? Do I tell my friends or coworkers (and how)? With my medical bills, how can I afford the education I want?
I never would have imagined that I could stave off a deadly blood cancer by taking a pill. Yet that's exactly what I -- and thousands of others with chronic myeloid leukemia (CML) -- do every day. That little orange tablet known as Gleevec (imatinib) has led us back to normalcy. As a breast cancer survivor with many friends and family members waging their own cancer battles, I only wish there were more solutions this simple -- and this hopeful.
We’ve just concluded one of the most historic years on record in terms of new therapy approvals for blood cancers. In all, the U.S. Food and Drug Administration (FDA) approved 18 therapies to treat patients with blood cancers, including some entirely new agents and some new uses for already approved drugs.
To provide education and support to patients and to encourage research into these rare cancers
Patients, caregivers, healthcare professionals, researchers
Website or 206-661-2253 http://www.tcllfoundation.org/To support cures and improve the quality of life for people living with blood cancer in Brazil.
Patients, caregivers, health professionals
Website or +55 11 3149-5190 http://www.abrale.org.br/