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Gold Ribbon Hero: Trevor

Gold Ribbon Hero: Trevor

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.” 

Time is the most precious thing we have with our loved ones and this Giving Tuesday, we ask that you give the gift of time. Whether it’s funding research, raising awareness, empowering or supporting kids with cancer your gift will help secure more time for cancer’s littlest patients.

In addition to traditional donations, this Giving Tuesday, you can form teams to fundraise together. Share your links on social media or through text to increase ACCO’s funding of childhood cancer research… because kids can’t fight cancer alone!®

Donate today to increase ACCO’s funding of childhood cancer research.

Trevor was also pictured in our “What About Kids?™”  campaign in September 2021

Down Syndrome and Leukemia

Each year, about 6,000 children in the United States are born with Down syndrome, also known as trisomy 21, a condition where they have an extra copy of their 21st chromosome. The extra chromosome causes delays in their mental and physical development and makes them more susceptible to certain health issues, including problems with their heart, lungs, vision and hearing. It also makes them more likely to develop certain diseases, like childhood leukemia.

Is leukemia common in Down syndrome?

Leukemia is still considered rare in children with Down syndrome, but they are more likely to develop leukemia than other children. One large-scale 2021 study found that 2.8% of children  with Down syndrome had leukemia, compared with only 0.05% of other children. In particular, children with Down syndrome are 150 times more likely than other children to develop acute myelogenous leukemia, or AML, before age 5. The study also found that children with Down syndrome were more likely to develop acute lymphoblastic leukemia, or ALL, at any age. 

How is Down syndrome related to leukemia?

For many years, scientists didn’t know why so many more children with Down syndrome developed leukemia. But this year, researchers at the Linda Crnic Institute for Down Syndrome discovered that it could have something to do with their stem cells.

Stem cells are special cells that replicate themselves and can develop into different types of cells. What the researchers found is that children with Down syndrome are more likely to have clonal hematopoiesis (CH), a condition where blood stem cells develop a mutation and then continue to replicate, leading to a buildup of mutated blood cells.

Some people with CH can be healthy and have no symptoms. But in others, CH can lead to blood cancers, especially AML.

Prognosis and Treatment for Children with Down Syndrome and Leukemia

In particular, children with Down syndrome tend to develop a subtype of AML called acute megakaryocytic leukemia, or AMKL. This subtype is very rare among other children and can be very difficult to treat, but children with Down syndrome and AMKL typically respond well to treatment. It’s believed that the very mutation that makes children with Down syndrome more likely to develop AMKL actually makes their cancers more susceptible to treatment. 

All children with leukemia are treated with some combination of chemotherapy. However, children with Down syndrome tend to have more side effects from chemotherapy, so their doctors will adjust their treatment to reduce the toxicity while maintaining its effectiveness.

Overall, 80% of children with Down syndrome and leukemia will survive. A child’s survival depends on many factors, however, so it’s important for parents to discuss their individual child’s prognosis with their doctor.

The American Childhood Cancer Organization is the nation’s oldest and largest grassroots organization dedicated to childhood cancer. We shape policy, raise awareness, and offer educational resources to children with cancer, survivors, and their families. With your help, we can continue to provide our support free of charge. Donate now.

Donate to ACCO

 

 

Learn more about childhood leukemia:

Amazon + ACCO Ambassador: Sofia

Meet Sofia, 2021 Amazon + ACCO ambassador. Sofia is a 7 year old acute lymphoblastic leukemia warrior who loves cooking.

When Sofia was initially diagnosed, she had chronic fevers, was very tired and had petechiae inside her lip. Once she was in the hospital, they drew blood and had the results. “They pulled my husband and me out of the room. At that moment we knew it was bad news. The doctor gave us the diagnosis and we were devastated,” remembers Alicia, Sofia’s mother. Treatment started immediately and will last a little over a year.   

“Sofia is definitely a hero because she has remained strong on this journey. Every time there has been a hospital stay or clinic visit, she always asks what medicine they are giving her and for what reason which is a great quality to have. Her doctors and nurses constantly tell me how calm she is and that she is a great patient.”

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

Make an Impact on YOUR Terms with ACCO’s Founding Hope Program

 

ACCO created the Founding Hope Funds to provide a platform to support courageous children and their families by giving back to the childhood cancer community. Families, siblings or friends can honor or remember a child while making an impact on their local childhood cancer community.  Founding Hopes are under ACCO’s fiscal responsibility and can leverage off of their fundraising, graphics and social media platforms.  With all the back office support taken care of, the Founding Hopes are free to concentrate on their missions.  

Our Founding Hope funds are our teams on the ground supporting their local hospitals and warriors.


WITH Grace Initiative

Mission: Take the initiative. Make an impact. 

What they do: The WITH Grace Initiative started in 2020 and is dedicated to making an impact by supporting childhood cancer initiatives. Grace, a childhood cancer survivor, led yoga sessions during the pandemic, donated toys and bagels to local area hospitals and asked her Governor to declare September as Pediatric Cancer Awareness Month. In July, Grace stood alongside NJ Senator Anthony M. Bucco to press the button voting “yes” to fund vital pediatric cancer research in New Jersey. Learn more about the WITH Grace Initiative here. Make an impact. WITH Grace. 

DONATE here


Karis’ Cause 

Mission: Help take the sting out of childhood cancer.  

What they do: Karis’ cause is dedicated to providing support and assistance to families facing a childhood cancer diagnosis. To date, Karis’ Cause has raised more than $250,000 through sponsors and individual donors for its annual 5K. Despite the virtual 5K in 2020, Karis’ Cause was able to raise more than $74,000 in donations. Karis’ Cause helps by supporting the 12th floor at the local hospital. They have donated food, art supplies and gift cards to help families in need. Learn more about Karis’ Cause and take the sting out of childhood cancer by clicking here.

DONATE here

 


Meg’s Giveback  

Mission: Give back a little childhood.

What they do: Meg’s Giveback started in December 2020 and has been successful in securing more than $5,000 in funds. In July, Meg distributed her first toy haul to her local hospital under her Founding Hope, Meg’s Giveback! She plans on doing many more toy donations and fundraisers to help “give back a little childhood”. Learn more about Meg’s Giveback <.

DONATE here


Jake’s Dragon Foundation

Mission: Funding innovative pediatric cancer research and assisting families financially. 

What they do: Jake’s Dragon Foundation (JDF) was born out of profound loss when Jake passed away from peripheral t-cell lymphoma. Most recently, JDF was instrumental in helping raise awareness inside the Pennsylvania state legislature and securing $10 million dollars for pediatric cancer research in the 2021 state budget. Fundraisers like the annual 5K run/walk, push up challenge and numerous other events have been extremely successful to raise awareness and funds for JDF’s mission. Learn more by clicking here.

DONATE here


Kin’s Kids 

Mission: Honoring Kin the best way we know how and that is helping other children and their families while in treatment. 

What they do: Kin’s Kids is dedicated to helping kids and their families affected by cancer. Fundraisers for Kins’ Kids help the community by providing financial assistance in the form of gas, grocery and restaurant gift cards. They are not only dedicated to helping raise money for the cause, but also raise awareness for childhood cancer. Learn more about Kins’ Kids here.

DONATE here.


Declan the Dinosaur 

Mission: Taking a bite out of cancer.

What they do: In May 2016, Declan was diagnosed with acute myeloid leukemia. Upon completing his treatment, the Declan the Dinosaur Foundation was created. He was an advocate for childhood cancer, blood donation and the bone marrow registry. Just a month after starting his foundation, Declan’s cancer returned and spent an additional 16 months in and out of the hospital. In May 2018, Declan gained his angel wings. His family continues to help advocate for childhood cancer and holds regular blood drives in their community. Learn more about Declan the Dinosaur and donate your blood today. 

DONATE here.


The #NoahNation Foundation

Mission: Bringing dignity and comfort to all cancer kids undergoing treatment. 

What they do: The #NoahNation Foundation seeks to provide pajamas that are altered using velcro, snaps and plastic zippers so children can fight cancer in comfort! The pajamas are metal free so that the children can have tests done while in the pajamas. Learn more about The #NoahNation Foundation here.

DONATE here.


WeLoVeRiley Fan Club 

Mission: Stay true to all things Riley while providing advocacy, practical support, resources and FUN to kids with cancer and their families whenever possible. 

What they do: When Riley was on treatment, he brainstormed ways he could help the childhood cancer community with his mother. Sadly, in 2012, Riley gained his angel wings. His mother was dedicated to carrying out Riley’s mission by helping kids and “We Love Riley” Fan Club was born. The fan club surprised the staff and families of children’s hospitals in the surrounding area of Massachusetts with Starlight Fun Center Mobile Entertainment Units. Learn more about the We Love Riley Fan Club here.  

DONATE here.


Princess Kynslee’s Kingdom 

Mission: Bringing smiles to children and their families and funding pediatric cancer research. 

What they do: Princess Kynslee’s Kingdom was established in 2019, a year after Kynslee gained her Angel wings. Princess Kynslee’s Kingdom has donated hundreds of toys and games to their local pediatric oncology unit and more than 50 parent/caregiver bags. So far, Princess Kynslee’s Kingdom has donated more than $3400 to pediatric cancer research at Children’s National Medical Center and remains dedicated to helping children fighting cancer in memory of Kynslee. Learn more about Princess Kynslee’s Kingdom here.   

DONATE here.


Make an impact on your terms with ACCO’s Founding Hope Program.

For more information, please contact Keli Mazzuca, Director – Founding Hope Program, at kmazzuca@acco.org

Click the button to learn more.

Start Your Founding Hope

 

 

ACCO + Jel Sert Ambassador: Lukas

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.

Immediately following Lukas’ diagnosis of B-Cell ALL, he underwent a bone marrow biopsy and spinal tap. Lukas’ mother, Nicole, said, “there are really no words to describe the feeling of those first few days, weeks and months. Anger, sadness, shock, disbelief, grief, fear, and denial are among many of the feelings that consumed me, and I still feel them today at different points of time.” Treatment started immediately after diagnosis and will continue through the summer of 2022, just in time for his 5th birthday! During the first 6 months, Lukas went to clinic every week for IV chemotherapy and visited the hospital regularly for spinal taps and surgeries. In 2019, he entered the maintenance phase of his treatment.
 
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

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.