Receiving the news that a child has been diagnosed with cancer is absolutely heartbreaking for any parent as well as other family members and friends. Educating yourself about childhood cancer is vital to fighting the disease, while fundraising for childhood cancer awareness, critical research or for your own child with cancer can fund hope for new treatments and help ease the financial burden.
It’s important to first understand the impact cancer can have on a child’s life, according to Ruth Hoffman, executive director of the American Childhood Cancer Organization (ACCO) in Kensington, Md., founded in 1970 and encompassing a board headed by parents of children who have battled cancer.
“Children with cancer don’t know what life is like before cancer as adults do,” Hoffman said, adding that her daughter was diagnosed with cancer at age 7 and developed secondary cancer at age 24. “She does not remember what life was like without cancer.”
Childhood cancer also defines who children are in a different way than in adults, as kids have a very different outlook on life, Hoffman added.
There are several key facts to know about childhood cancer:
- According to the National Cancer Institute, each year in the U.S., there are an estimated 15,780 children diagnosed with cancer.
- Leukemias, which are cancers of the bone marrow and blood, are the most common childhood cancers, accounting for about 30 percent of all cancers in children.
- Cancer remains the most common cause of death by non-communicable disease for children in America.
The Current Outlook
According to Hoffman, statistics indicate that childhood cancer is on the rise, with the amount of brain tumors appearing in children continuing to increase. Moreover, there has been very little drug development specifically used for childhood cancer in the last 25 years, especially compared to the amount of drug development for adult cancers. There have been two new drugs to treat childhood cancers introduced in the last 15 years: one in 2000 and one in 2015.
AML (acute myeloid leukemia) has shown no improvement in 25 years, with survival rates for children with AML in the 40 percent range.
“Much work remains to be done to improve outcomes for this group of patients, as the treatment being used 25 years ago is the same treatment being used today,” Hoffman said.
There has also been no improvement in the treatment of DIPG (diffuse intrinsic pontine glioma), according to Hoffman, who says on average, children are around 8 years old at the time of diagnosis, and their life expectancy is only around eight months.
“It is an extremely awful death,” she said.
There have been no changes in the treatment or survival rate of childhood bone cancer (osteosarcoma).
There have, however, been major advances in survival rates for childhood ALL (acute lymphoblastic leukemia) in first remission, which are now approaching 80 percent, while for children in underdeveloped countries with the disease, there is only a 20 percent survival rate due to lack of funds and access to medical treatments.
CAR T therapy, which uses a patient’s own immune system to fight cancer, is among the most recent breakthroughs in childhood cancer research, according to Hoffman.
“There have been 53 children in the U.S. who have been treated with CAR T therapy,” Hoffman said. “These children all had relapsed with AML, and now 94 percent of these kids are in complete remission.”
CAR T therapy is still in the experimental stages, being given to kids in phase 1 and phase 2 stages of cancer.
“This treatment appears to be very promising,” Hoffman said.
Meanwhile, the National Cancer Institute will be spearheading the funding for precision medicine to treat relapsed children with cancer.
Education Is Key
While a childhood cancer diagnosis is devastating, patients and families who educate themselves about the disease can increase the chances of beating it, according to Hoffman.
“If you don’t know what you’re facing, you can’t fight it,” she said. “It’s important at a child’s age level to understand that they can be empowered to fight childhood cancer. Being educated saves just as many lives as research.”
Education is extremely important to the ACCO. It is the largest producer of education materials and resources on childhood cancer in the U.S. In 2015 alone, the ACCO provided more than 45,000 learning resources to educate children, parents, teachers and others about childhood cancer.
Fundraising for Childhood Cancer
Raising awareness and funding research for childhood cancer is an incredibly powerful weapon in the fight against the disease.
ACCO has signature fundraising events to raise awareness year-round, including PJammin days to educate school-aged peers about compassion, and Go Gold for Kids With Cancer events, which utilizes the signature gold ribbon ACCO created as the symbol of childhood cancer in 1987.
Those wishing to contribute in their own way can launch an online campaign to start crowdfunding for kids with cancer to raise awareness, fund research, help alleviate the financial burden of cancer treatments and other costs, and pay tribute to a loved one who passed away.
Not only does a cancer diagnosis turn a child’s entire world upside down, it also adds a large amount of financial stress due to overwhelming medical expenses that most families are unprepared for. Cancer is known for being very costly, as research shows that families fighting this awful disease are twice as likely to go bankrupt as those that are not. In addition to treatment, there are additional costs to consider, such as food, lodging, and transportation to add to the already mounting stack of medical bills.
These are some of the reasons why more and more families are turning to crowdfunding nowadays. Setting up a crowdfunding campaign to help cope with the high cost of cancer care is a simple and effective way to receive support from loved ones and people all over the world.
Five Successful YouCaring Children’s Cancer Fundraisers
At just 4 years old, Bryson was diagnosed with diffuse intrinsic pontine glioma (DIPG), a type of childhood brain cancer. He passed away in July 2015, just nine months after his diagnosis. Since his death, Prayers for Bryson aims to raise awareness about DIPG and the importance of finding a cure for this devastating disease, which has a survival rate of less than 1 percent.
Bryson’s mom Lily was able to raise more than $30,000 with her YouCaring campaign to help toward Bryson’s medical expenses, and she utilized the incredible power of social media by creating a Facebook page to gain additional exposure and keep supporters updated on Bryson. Her Facebook page, Prayers For Bryson, now has more than 26,000 followers and continues its mission to raise awareness for childhood cancer.
When Jason Sherman’s brother Eric passed away from leukemia in 2010, he not only lost his brother, he lost his best friend and role model as well. Eric taught Jason everything he knew, including how to shred it on a skateboard! In light of that, Jason and his best friend Tommy started a YouCaring fundraiser to raise money in support of The Eric Sherman Memorial Scholarship Fund by skateboarding from New York City all the way to William Lawrence Camp in Tuftonboro, N.H.
“The Eric Sherman Memorial Scholarship Fund sends kids to camp who show demonstrated financial need, giving them a life-changing experience that Eric and I both value,” Sherman said. “Eric, my eldest brother Corey and I attended William Lawrence for many years. Eric even went on to become a counselor at the camp. He was known to always go beyond the call of duty in order to bring excitement and discovery to the entire camp. His influence on campers and staff was profoundly felt, and by contributing money to his memorial scholarship fund, we can continue his positive influence.”
Their journey to honor Eric has already raised more than $17,000, and their fundraiser has been featured in several news articles thus far.
Beautiful little Sophie Ryan was diagnosed with a rare optic pathway glioma brain tumor June 23, 2013, at only 8.5 months old. Since her diagnosis, she has undergone major brain surgery to remove a cyst and biopsy the tumor to ensure that it wasn’t terminal. According to a recent update by her family, Sophie has endured five other hospital stays due to chemo-related issues, has had nine blood transfusions, and recently finished a 13-month chemo protocol Nov. 20, 2015.
Amazingly, Sophie’s family has been able to raise just over $100,000 with their YouCaring fundraiser to help toward Sophie’s medical expenses. Much of their fundraising success can be attributed to the fact that their fundraiser has been shared on social media more than 39,000 times. The Facebook page Prayers for Sophie is dedicated to providing updates on Sophie and tracking her progress as she battles this horrible disease.
Precious baby girl Emma Marie Wyman was diagnosed with a rare type of sarcoma in May 2015 and will be undergoing at least one year of chemotherapy treatment at the Children’s Hospital of Philadelphia. Her parents, AJ and Lindsey Wyman, set up a YouCaring page to help with medical expenses, travel expenses and regular monthly bills for their cars and home, as both have had to take time off from their jobs to be with their little girl during this life-altering time.
Their fundraiser has raised more than $120,000, and they have been vigorously promoting it on social media and have added a large gallery of adorable photos of little Emma. These factors have greatly helped their campaign become successful and receive support from thousands of people. They have also created a Facebook page, Emma’s Angels, to track progress and provide updates to all of her supporters.
Adorable Desi Cechin was diagnosed with stage IV high-risk neuroblastoma April 16, 2014. Her parents learned the devastating news that the size of the tumor made it inoperable. She has been undergoing several aggressive treatments of chemotherapy and clinical trials since April 24, 2014, at Loma Linda University Children’s Hospital in Loma Linda, Calif., and at Memorial Sloan Kettering Cancer Center in New York.
Her parents created a YouCaring campaign to help pay for the medical expenses brought on by this awful disease, and so far they’ve raised more than $106,000 toward Desi’s fight. Desi’s family has uploaded numerous videos and images to their fundraiser, it has been widely shared on social media more than 5,000 times, and they have created the Facebook page Believing for Desi, which now has more than 21,000 followers.
Ready to kick off your own campaign for a child with cancer and family in need or to raise awareness about childhood cancer? Check out twelve ways you can support childhood cancer awareness. Launch a crowdfunding campaign today.
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