Meet Lukas, 2021 ACCO + Jel Sert Ambassador. Lukas is a 4 year old B-Cell acute lymphoblastic leukemia warrior who loves playing with his brother Jakob.
Author Archives: American Childhood Cancer Organization
ACCO + Jel Sert Ambassador: Lukas
ACCO + Jel Sert Ambassador: Charlotte
Meet Charlotte, 2021 ACCO + Jel Sert Ambassador. Charlotte is a 13 year old osteosarcoma warrior who loves painting and drawing.
When Charlotte was first diagnosed, she was experiencing debilitating pain in her hip which prevented her from walking or standing up straight. An MRI revealed a spinal fracture. Charlotte’s mother, Kirsten remembers, “I was instructed to take Charlotte to the emergency room to start the process of more testing. She was admitted and a biopsy confirmed her LCH diagnosis.” Charlotte has had two major back surgeries to repair and stabilize her spine. She will be in treatment now through this November.
“Charlotte has had such an amazing attitude throughout this journey. She has been able to tolerate so much more than any kid should have to. People always comment on her smile, which she manages to show even on hard days.”
ACCO works tirelessly to identify and reduce the disparity between adult and childhood cancer research and treatment. We must continue to ask, “What About Kids?™” Together, we can make childhood cancer a state health priority in funding and policies for kids fighting cancer and long-term childhood cancer survivors.
This Childhood Cancer Awareness Month, donate today…because kids can’t fight cancer alone!®: https://give.acco.org/ChildhoodCancerAwarenessMonth2021
On Identity.
I am a cancer mom. Your identity forever changes from the moment you hear your child’s diagnosis.
People say there is life before cancer and the life after and nothing is more true. If you are like most, you have very little frame of reference for what is being told to you, where to start and how life changing it is to find out your child has cancer. Maybe that is for the better – you need to walk the road regardless of potential outcomes, next to your child, with your head held high.
My Mason was diagnosed at 4 years old with T Cell Acute Lymphoblastic Leukemia in February of 2016. At the time his white blood cell count was over 975,000 which later we would find was “record breaking” at Children’s. He had hemorrhages in behind his eyes, lost his vision (for two long months until an amazing retina surgeon would later restore it), needed to learn how to walk again all while figuring out chemo and getting him in remission for the first time.
BUT, as any cancer parent will tell you, there were so many good moments filled with resiliency, hope and joy. You learn quickly to ride the highs because you know at any moment it is possible to bottom out. Mason was able to go to kindergarten and part of his 1st grade year – he loved it all, smiling through it, despite dealing with side effects of chemo on a daily basis. He never knew he was dying, we never treated him like he was and until his last week he lived life to the fullest. Mason ultimately passed in March of 2018. He taught me everything there is to know about embracing your circumstances, living life and choosing joy – I am forever grateful for him and his six years on this earth.
September is childhood cancer awareness month and back to school. Many cancer parents will tell you they struggle with this month. I have a hard time scrolling through my social media feeds and looking at some of the darkest days of my friends and their children as they raise awareness. I love the happy return to school pics but every year I feel further removed from it and this year I wonder what Mason would be like entering his fifth grade year. This year, layered with the pandemic taking its toll, the month is tougher for our cancer warrior families. Hoping their child can return to school, weighing their child’s safety returning to school, or grieving the child that should have been in school. Please grant these families grace, please walk beside them and make them feel seen. My village has and continues to lift me up. I could not do it without them.
I implore you to continue to raise awareness, find ways to drive funding for research, lift spirits of the families in battles or suffering losses, and make sure our survivors live long, healthy full lives.
Amazon + ACCO Ambassador: Trevor
Meet Trevor, 2021 Amazon + ACCO Ambassador. Trevor is a 15 year old two time medulloblastoma warrior who loves to travel and experience new adventures with his family.
When Trevor was first diagnosed, he was experiencing dizziness, nausea and seizure-like episodes. In November 2016, Trevor’s brain was hemisected to remove the fist-size tumor. Within days, he was released home for rehab, chemotherapy and radiation. In July 2020, Trevor’s team discovered another tumor and started treatment immediately.
Michelle, Trevor’s mother said, “Trevor is THE MAN! He’s a hero because he perseveres in the face of monumental circumstances. Trevor’s body betrays him with chemotherapy and wipes out not just an immune system, but stamina too. He has to do double and triple duty all the time and he does it with a cheerful attitude and a pleasant, upbeat and hopeful anticipation of all things working out for good.”
ACCO works tirelessly to identify and reduce the disparity between adult and childhood cancer research and treatment. We must continue to ask, “What About Kids?™” Together, we can make childhood cancer a state health priority in funding and policies for kids fighting cancer and long-term childhood cancer survivors.
This Childhood Cancer Awareness Month, donate today…because kids can’t fight cancer alone!®: https://give.acco.org/ChildhoodCancerAwarenessMonth2021
Amazon + ACCO’s Ambassador Serves as Keynote Speaker at 2021 Proton Conference
“Post diagnosis, my life has definitely changed. I feel a lot stronger than I was when I entered my treatment and I feel definitely a bit more mature because I spent a lot of time in the hospital than many people do in a lifetime. So it just made me realize what it means to kind of be here and appreciate the gift of life.”
Grace Eline was Amazon + ACCO‘s Ambassador in 2018 and she continues to advocate for the cause with her very own Founding Hope, WITH Grace Initiative.
The White House Declares September as Childhood Cancer Awareness Month in 2021
A Proclamation on National Childhood Cancer Awareness Month, 2021
For millions of American families — including my own — the fight against cancer is personal. When a person you love is diagnosed with cancer, it stops your heart and throws your world off of its axis. That fear and heartache is only compounded when cancer strikes a child.
Across America, thousands of courageous children and adolescents diagnosed with cancer each year are facing life-threatening struggles. They are cared for by loving families, friends, volunteers, and health care teams who band together to support our most vulnerable patients as they face their cancer journey. During National Childhood Cancer Awareness Month, we honor the young lives taken too soon, as well as the growing number of young cancer survivors, some of whom may face serious health challenges throughout their lifetimes. We recognize the remarkable progress made in treatment and survivorship, and rededicate ourselves to the development of more effective therapies so that all children have the chance to live long and healthy lives.
Despite the extraordinary advancements medical science has made in recent years, cancer remains the second leading cause of death in the United States — and the leading cause of death by disease for American children between infancy and age 15. Cancer is cruel and spares no age. It inflicts an incalculable toll on young patients and their loved ones. Though improvement has been made in some areas, survival rates for all childhood cancers remain too low. A growing number of childhood cancer survivors are experiencing longer life expectancies, but far too many continue to face significant long-term physical, emotional, and cognitive effects due to their cancer and treatment. As a Nation, we must do more to better understand the causes of pediatric cancer, improve treatment, and enhance the lifelong well-being of survivors.
When I lost my son Beau to cancer after his courageous fight, I buried a part of my soul deep in the Earth. Too many families know that feeling too well — at any age, it leaves a black hole in your heart. In 2016, President Obama and I created the Cancer Moonshot Initiative to end cancer as we know it. Now, as President, I remain committed to that mission — and I will continue to invest in the critical research and care needed to defeat this devastating disease. That is why I am asking the Congress to launch the Advanced Research Projects Agency for Health — or ARPA-H — at the National Institutes of Health, to develop breakthroughs that prevent, detect, and treat cancer and other deadly diseases.
Our Nation is already seeing the progress of investing in pediatric cancer research and technology. We are improving our understanding of pediatric cancers that are particularly difficult to treat, and extending the promise of immune-based treatments for children and adolescents. We are seeing advancements in precision medicine approaches to treating childhood cancers — including progress on understanding how tumors respond to existing therapies. The National Cancer Institute (NCI) is leading the Childhood Cancer Data Initiative, which brings together the Nation’s childhood cancer research, advocacy, and care communities to ensure that we “learn from every child” with cancer by consistently gathering data in a way that protects patient privacy while allowing for rapid sharing of insights among researchers. This will enable us to accelerate progress and deliver effective treatments and cures to more children. Additionally, the Food and Drug Administration’s Pediatric Oncology program works with stakeholders to accelerate and support the timely, efficient development of safe and effective new drugs and biological products to treat cancers in children.
Many parents and family members feel terrified and overwhelmed following a child’s cancer diagnosis. To support families and pediatric caretakers, the NCI has resources available, including online and print materials and videos, to help families understand treatment options and provide information to help them navigate the cancer journey. Visit www.cancer.gov to learn more or talk to trained information specialists with the NCI Cancer Information Service in the United States at 1-800-4-CANCER.
My Administration is also committed to protecting childhood cancer patients and their families through the Affordable Care Act, which provides critical protections for individuals facing cancer, including children. Because of the Affordable Care Act, most insurance companies are now prohibited from limiting or denying coverage to young cancer patients participating in clinical research studies. And children who have recovered from cancer can no longer be denied insurance coverage based on the fact that they have a pre-existing condition.
During National Childhood Cancer Awareness Month, we pay tribute to the health care professionals, researchers, private philanthropies, social support organizations, and patient advocacy groups who work together with families across the country to provide hope and help to children diagnosed with cancer and to develop better treatments. Together, we will carry on their work — and build a future in which cancer no longer threatens the lives of our Nation’s children.
NOW, THEREFORE, I, JOSEPH R. BIDEN JR., President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2021 as National Childhood Cancer Awareness Month. I encourage citizens, government agencies, private businesses, nonprofit organizations, the media, and other interested groups to increase awareness of what Americans can do to support the fight against childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of August, in the year of our Lord two thousand twenty-one, and of the Independence of the United States of America the two hundred and forty-sixth.
JOSEPH R. BIDEN JR.
HOW YOU CAN HELP DURING CHILDHOOD CANCER AWARENESS MONTH
September is Childhood Cancer Awareness Month, and by the time this month is over, another 1,300 children in the U.S. will be diagnosed with cancer. Even with the best treatments available, 1 in 5 children with cancer will not survive. And of those who do, most will have long-term side effects from their treatment.
For these children and their families, childhood cancer is something that affects them every day of the year. For them, it’s not enough just to be aware — they need you to act now. Here are 6 ways you can help children with cancer this month:
Buy a childhood cancer awareness shirt. The majority of funding for cancer research is dedicated to adult cancers, not childhood cancers. So we’re asking, “What About Kids?™” Join us and help raise awareness this month with a customizable shirt. Choose from multiple styles and colors, and even personalize it with the name of a fighter or survivor you know. Want to go the extra mile? Create your own T-shirt fundraiser so your friends and family can buy their own shirts to match.
Donate. The American Childhood Cancer Organization is the nation’s oldest and largest grassroots organization dedicated to childhood cancer. We fund research, shape policy, raise awareness, and offer resources to children with cancer, survivors and their families. And with your support, we can continue to offer those resources free of charge to families facing a childhood cancer diagnosis.
Join an advocacy training. Each month, ACCO offers free online trainings to help you become the powerful changemaker children with cancer need. Register for our monthly advocacy training on September 21 and catch up by watching recordings of past meetings when you fill out this form.
For parents of children with cancer, we’ve partnered with Momcology to offer trainings specifically for parents who want to turn their frustration into action. Join our Kids Too initiative to learn how you can help influence state policy and make your children’s voices heard.
Go Gold® and fundraise for kids with cancer. Gold is the color for childhood cancer awareness, so why not start a gold-themed fundraiser this month? Here are 8 creative fundraising ideas to get you inspired.
Host a PJammin® Party. Children with cancer often spend weeks or months living in their pajamas when they’re in the hospital for their treatment. Stand in solidarity with these kids by organizing a PJammin day at your school or workplace to raise awareness and funds for childhood cancer.
Join a state or federal campaign for children with cancer. Show your legislators that you want them to make childhood cancer a health priority. Visit our advocacy page to see the current issues affecting children with cancer and how you can show your support.
Need more inspiration? Follow us on Facebook, where we’ll be sharing stories of our Gold Ribbon Heroes all month long.
To learn more about childhood cancer, visit our childhood cancer statistics page.
Social Media Goes Gold® this September to Raise Awareness for Childhood Cancer
Beltsville, MD., August 25, 2021 – The American Childhood Cancer Organization (ACCO) is on a mission to turn social media gold this September by asking the community to post the signature gold square or change their profile picture. ACCO seeks to raise awareness for childhood cancer by families sharing stories of their “why.” The square will be rolled out on social media on Wednesday, August 25, 2021 to build momentum leading into September.
By turning social media gold, it will increase awareness of childhood cancer issues, create supportive communities for families who are dealing with childhood cancer and raise funds to provide information and support materials for children currently fighting cancer. An official fundraiser has been started to turn social media gold here.
“The gold ribbon is known as the international awareness symbol for childhood cancer because gold is a precious metal, and is therefore the perfect color to reflect the most precious thing in our lives – our children” says Ruth Hoffman, CEO, ACCO.
The signature square is located on ACCO’s “Downloadable Content” page of the website and is available now to share.
About The American Childhood Cancer Organization
The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. We’re dedicated to making childhood cancer a national child health priority through shaping policy, supporting research, raising awareness and providing educational resources and innovative programs for children with cancer, survivors and their families. For more information, please visit www.acco.org/donate
Gold Ribbon Hero: Shanaia
Meet Shanaia, a Disney princess loving ALL Survivor!
When Shanaia started spiking a fever and felt lethargic, her parents took notice. She started bruising easily and had a cough which prompted them to take her to the doctor. After a few tests, doctors told Shanaia’s parents that she had B-Cell Acute Lymphoblastic Leukemia. “We were so scared. We cried a lot and could not sleep for a while. It was a hard and sad day” remembers Joseline, Shanaia’s mother.
Treatment consisted of chemotherapy and a port. “It was so hard, Shanaia was so scared but now, she is a happy survivor!”
Shanaia just celebrated her 9th birthday and loves to play soccer and volleyball.
Learn more about ALL here.
Together, we can make a difference.
Donate today… because kids can’t fight cancer alone®.
Gold Ribbon Hero: Leonardo
Meet Leonardo, soft tissue sarcoma warrior and an aspiring superhero and fisherman!
Leonardo was diagnosed with a desmoplastic small round cell tumor (DSRCT) in 2020 after vomiting landed him in the pediatrician’s office. When Leonardo was diagnosed “we were completely shocked about this rare childhood cancer. My son looked very healthy” remembers Ainalez, Leonardo’s mother. DSRCT is a very rare, aggressive and fast growing soft tissue childhood cancer with no current standard of treatment or cure.
Treatment began almost immediately and he recently rang the bell for radiation. Leonardo had a whole tumor resection in May 2020 and has participated in a clinical trial to prevent relapse. Doctors are calling him a “miracle boy.” Leonardo continues to beat the odds with a healthy immune system despite so many invasive treatments.
Leonardo’s energy is boundless and most days, you can find him playing with Hot Wheels. He is looking forward to beginning school this month.
Learn more about soft tissue sarcomas here.