Though pediatric cancer death rates have declined by nearly 70 percent over the past 40 years, cancer remains the leading cause of death from disease among children, according to the National Cancer Institute. In the United States, an estimated 10,000 kids will have been diagnosed with cancer in 2015, and more than 1,000 children will die from the disease.
Because childhood cancers make up less than 1 percent of all cancers diagnosed each year, according to the American Cancer Society, drugmakers don't have much of an incentive to spend money on developing new drugs and treatments. And pediatric cancer research receives just a fraction of the money that adult cancer research gets.
For families with a child diagnosed with cancer, that's unacceptable. Many are taking matters into their own hands, raising money to fund much-needed research and raise awareness of the issues facing progress in combatting childhood cancers. For some, new treatments won't come soon enough to help their children, but these parents and siblings are dedicated to preventing other families from experiencing the loss they have. In other hopeful cases, survivors themselves are rallying behind the cause to help more kids get the kind of treatments that saved their lives. Meet 11 of the inspiring families across the country who are working tirelessly to raise awareness and funds.
Inspiration: The Miller family got involved in the childhood cancer world when their 9-year-old daughter was diagnosed with an inoperable brain tumor. Because Gabriella's tumor was the size of a walnut, they began to "smash walnuts" to signify smashing her tumor. While still undergoing radiation treatment, Gabriella began educating others about childhood cancer and what she was going through, speaking to her fourth-grade class, in schools, at fund-raising events, and twice to crowds at the National Mall.
Less than three months before Gabriella died in October 2013, the Millers started the Smashing Walnuts Foundation. Gabriella was the first person to sign the foundation contract. Her younger brother, who was only 5 at the time, was the second person to sign the contract, followed by her mom and dad.
Mission: Smashing Walnuts aims to raise awareness of the prevalence of childhood cancer and funds for childhood brain cancer research. Two weeks after Gabriella died, former House Majority Leader Eric Cantor asked the family if they would lend Gabriella's name to a Bill that was languishing in the House. It was renamed the Gabriella Miller Kids First Research Act (GMKFRA) and it proposed to move $126 million from political party conventions to the National Institute of Health for childhood disease research. The GMKFRA passed the House and the Senate and was signed by President Obama. Gabriella's mom, Ellyn Miller, now frequently meets with congressman and senators to educate them about childhood cancer and work to get laws passed to increase federal funding for childhood cancer.
Fund-raising: Smashing Walnuts Foundation has raised close to $500,000. Coupled with the $12.6 million that the Gabriella Miller Kids First Research Act appropriated for its first year of funding, SWF has raised over $13 million.
Pictured: The Millers met with President Obama in the Oval office as he signed the GMKFRA into law.
Inspiration: In 2008, when their son Pablo was diagnosed with bilateral Wilms Tumor, the Thrailkill-Castelaz family took to the blogosphere to keep their loved ones up-to-date on Pablo's progress, to vent, and to preserve their happy moments with him. Soon, their oldest friends were rallying alongside perfect strangers to help their family through each day. Unfortunately, Pablo passed away in 2009, six days after his sixth birthday. Because of the way their online community supported them through Pablo's illness and death, the family was inspired to start The Pablove Foundation.
Mission: The mission of The Pablove Foundation is to invest in underfunded, cutting-edge pediatric cancer research, inspire cancer families through education, and improve the lives of children living with cancer through the arts.
Fund-raising: Since 2009, the Pablove Foundation has raised over $7 million. One way the group funds its pediatric cancer research grants is by selling the photography prints taken by the children in its Pablove Shutterbugs program.
Pictured: Pablo with his mom Jo Ann Thrailkill, dad Jeff Castelaz and brother Grady.
Inspiration: Just before her first birthday in 1997, Alexandra "Alex" Scott was diagnosed with neuroblastoma. While battling her cancer, at age four she declared that she wanted to have a lemonade stand and give the money earned to doctors to allow them to "help other kids, like they helped me." Later that year, she held her first lemonade stand later with the help of her older brother and raised an amazing $2,000 for "her hospital."
Alex and her family continued to hold yearly lemonade stands in her front yard to benefit childhood cancer research. News of their efforts spread and people from all over the world, moved by her story, held their own lemonade stands and donated the proceeds to Alex and her cause.
In August 2004, Alex passed away at the age of 8, knowing that, with the help of others, she had raised more than $1 million to help find a cure for the disease that took her life. Through Alex's Lemonade Stand Foundation (ALSF), Alex's family—mom Liz, dad Jay, and brothers Patrick, Eddie, and Joey—and supporters around the world are committed to continuing her legacy.
Mission: ALSF aims to raise money and awareness of childhood cancer causes, primarily research into new treatments and cures, and to encourage and empower others, especially children, to get involved and make a difference for children with cancer.
Fund-raising: So far, ALSF has raised $100 million in a variety of different ways. The organization hosts nine special events, including a gala, a run, and culinary events, and supporters organize and hold as many as 9,000 grassroots events each year.
Pictured: Alex at her lemonade stand.
Inspiration: On July 6, 2008, the lives of the Sherwood Family changed forever when Billy, Jr., then 13-months old, was diagnosed with neuroblastoma, a very aggressive cancer of the sympathetic nervous system. In August 2009, in the midst of their son's grueling treatments, after witnessing the extreme suffering of other cancer families, and after realizing the extreme need of less toxic treatment options for children with cancer, Dena and Billy Sherwood founded Arms Wide Open Childhood Cancer Foundation. Now age 7, Billy, Jr. is a stage IV neuroblastoma survivor.
Mission: The mission of Arms Wide Open Childhood Cancer Foundation (AWOCCF) is to fund research and less toxic treatment options for children with cancer, to support families who are suffering hardship, both financially and emotionally, due to their child's diagnosis, and to raise awareness in the general public through The Truth 365, their documentary and social media campaign. CNN's Lisa Ling and dancer Gabi Shull are the national spokespersons for The Truth 365.
Fund-raising: Arms Wide Open hosts its own annual fundraisers, but also has many committed advocates and fundraisers who hold events each year with all proceeds to benefit AWOCCF and children fighting cancer. Their two main events are their Give Thanks for Life Gala in March and their Shave for a Cure Event in October. AWOCCF has raised over $3 million, which has helped to fund over 30 research grants and clinical trials, providing children with cancer alternative treatment options, as well as family grants and other programs.
Pictured: Mom Dena, dad Billy, 13-year-old Sydney, and 7-year-old Billy, Jr.
Inspiration: The Gorsegner's daughter Natalie Grace was diagnosed with high-risk acute lymphoblastic leukemia on August 16, 2012, and has been cancer-free since November 26, 2014. After coming to terms with Natalie's diagnosis, her mom Andrea began educating herself about her daughter's illness and childhood cancer in general. Shocked by the lack of funding, she started a blog, Infinite Love for Natalie Grace, to raise awareness, and in April 2013 the family launched a fundraising campaign called Will You Send Us A Dollar?, asking supporters to send whatever they could afford from their pockets or piggy banks, or from their own bake sales, yard sales, or collection jars.
Mission: The Gorsegners are committed to raising money to fund research efforts to find better, safer treatments for various forms of childhood cancer, as well as working to unite the childhood cancer community so they can be a louder voice in pleas for more funding. Andrea has united with The Truth 365 initiative of the Arms Wide Open Childhood Cancer Foundation in her advocating and fund-raising efforts, volunteering for them full-time.
Fund-raising: Through Will You Send Us a Dollar?, Andrea's blog, and the Infinite Love For Natalie Grace Facebook page, the Gorsegners have raised almost $300,000 and donated it to Arms Wide Open, where every penny goes directly towards research. Because of the amount of money they have raised, the Gorsegners have been able to allocate their donations to specific purposes. In 2013, they donated $110,000 to six grants for AML leukemia research in honor of a friend's 12-year-old son Ben, who lost his life to the disease. In 2014, they donated $164,000 to Ewing's sarcoma research to honor Julianna Edel, Natalie's best friend during treatment who lost her life to the disease almost two years ago.
Pictured: Mom Andrea Verdone, dad Dan, 8-year-old Hannah, and soon-to-be-6-year-old Natalie.
Inspiration: The Symmes family became involved in pediatric cancer research when their oldest daughter Caroline was diagnosed with Wilms Tumor, the most common form of kidney cancer found in children, at the age of 3. When Caroline relapsed, they discovered there was almost no research funding available for childhood cancers. Her physicians used all the means available to them, but Caroline succumbed to the disease at the age of 5 in 2009. After hearing that there was no research and nothing more could be done for their daughter, the Symmes knew they had to try to make sure no other parents ever heard those words. They started the Caroline Symmes Cancer Endowment.
Mission: The Caroline Symmes Cancer Endowment is raising funds to create a Pediatric Non-Central Nervous System (Non-CNS) Solid Tumors Program at Riley Hospital for Children. Individual genetic profiling identifies biomarkers that predict which therapies will be most effective for each child. This program, the only one of its kind in the world, will apply this research to the clinical setting to find new, life-saving treatments for children battling high-risk tumors.The organization's mission is to support the development of protocols that use new or existing drugs to fight childhood cancers resistant to other therapies, moving those treatments as rapidly as possible in the clinic. The scientists on their team will focus on but are not limited to: Neuroblastoma, Wilms Tumor, Rhadbdomyosarcoma, Osteosarcoma, Ewing Sarcoma, and Retinoblastoma.
Fund-raising: The Symmes have raised approximately $850,000. For the first three years, they organized community fundraising events such as Pink Label (pink was Caroline's favorite color), where local boutiques donated clothing for them to sell with 100% of the proceeds going to the endowment. Now a 501c3, they are soliciting private donations and corporate funding to raise the $8 million dollar goal for their hospital program more quickly and will continue to have public events to raise awareness in their community and state.
Pictured: Mom Elizabeth, dad David, and son Sullivan at a fund-raising event. Siblings Natalie, 9, and Sullivan, 8, at a free yoga class for patients, families and staff at Riley Hospital for Children to kick off Childhood Cancer Awareness Month. Caroline, who would now have been 10.
Inspiration: The Moore family got involved in childhood cancer advocacy and fundraising soon after their daughter, Georgia, was diagnosed with Acute Lymphoblastic Leukemia (ALL) the day after her 10th birthday. While enduring countless infusions, transfusions, pills, and spinal taps during 28 months of treatment, her motto was "just keep swimming"—figuratively and literally—until she won her battle with cancer. Their Georgia and the Peachy Keens Hero Fund for St. Baldrick's Foundation was created in honor of and celebrates the 5th year past her cancer diagnosis. The Moores know they were lucky that Georgia had a proven treatment protocol to follow and want that for all kids facing a cancer diagnosis.
Mission: The St. Baldrick's Foundation is committed to funding the most promising research to find cures for childhood cancers and give survivors long, healthy lives. As a leukemia survivor, Georgia and her Hero Fund inspire others to "just keep swimming" by raising awareness, hope, and research dollars.
Fund-raising: Through their team, The Peachy Keens, they have raised over $100,000 in five years by hosting lemonade stands, children's arts shows, a comedy night, a trivia night, and selling birthday candles on their cakes. Last year, Georgia's artwork was used on products sold by The Property Brothers from HGTV in support of the St. Baldrick's Foundation. Mom Courtney, dad Trevor, and sister Ivy have also participated in St. Baldrick's signature head-shaving fundraising events (Courtney has also helped organized the last three national events, which raised over $1.7 million for childhood cancer research). Georgia is planning to take a turn in the barber chair in 2017, when she celebrates five years off treatment and is officially cancer-free.
This year, the "Georgia and the Peachy Keens St. Baldrick's Fellow" grant was awarded to Dr. Corinne Summers at Seattle Children's Hospital. The $187,350 grant will support Dr. Summers' research on finding a way to prevent relapse from occurring in ALL survivors.
Pictured: Dad Trevor, mom Courtney, Georgia, and sister Ivy, who shaved her head for the St. Baldrick's fund-raiser in March.
Inspiration: The Matthews' first son, Ezra, was an amazing dancer whose laughter and smile were contagious. On the 400th day of his life, he was diagnosed with stage four neuroblastoma cancer. He learned to walk and to talk in hospitals. When Ezra relapsed, the day before his 2nd birthday, they ran out of options quickly. There weren't many trials to choose from, and he didn't qualify for most of them. After Ezra died, the Matthews traveled around talking to hospitals and researchers, and met other families with kids fighting neuroblastoma who also faced a lack of treatment options. Hoping to change that, the Matthews started Because of Ezra.
Mission: Because of Ezra seeks to raise funds and awareness for neuroblastoma cancer research making a difference in kids' survival today.
Fund-raising: By the end of 2015, they will have given over $700,000 directly to patient-affecting childhood cancer research. Fund-raisers include their annual Karaoke for the Kure event, a charity golf tournament hosted by corporate sponsor Bright House Networks Enterprise Solutions, and restaurants such as Lee Roy Selmon's donating a portion of specific food and beverage sales to their organization through the month of September. They also work on advocacy with various government officials to bring greater funding to childhood cancer research.
Pictured: Dad Kyle, mom Robyn, and brother Charley. Ezra, who would now be seven.
Inspiration: On January 27, 2007, Andrew McDonough helped his team win a Pennsylvania State Championship in soccer. Just 48 hours later, he was diagnosed with leukemia and went into septic shock and cardiac arrest. Though the doctor told his family that Andrew would not live through the night, Andrew lived 166 more days, undergoing nearly 50 surgical procedures and suffering four strokes and a brain aneurysm. Andrew died in his 16-year-old sister Ali's arms at the age of 14 on July 14, 2007. Two weeks later, the McDonough family started The Andrew McDonough B+ Foundation, named for Andrew's blood type and the "be positive" way in which he lived.
Mission: The B+ Foundation fights childhood cancer by funding research and by providing assistance to families of kids with cancer. They have helped families from over 250 hospitals across the country.
Fund-raising: They've raised over $10 million, much of it with the theme of "Kids Helping Kids Fight Cancer" through large fund-raising events on high school and college campuses across the country, including Notre Dame, University of Texas, University of Washington, Clemson, New York University, and more. Their "UDance" event at the University of Delaware raised $1.3MM in 2015. They are also touched when children ask for donations to The B+ Foundation in lieu of birthday presents. Up next is the 9th Annual B+ Golf Outing and Dinner, to be held on September 28, 2015.
Pictured: Dad Joe, mom Chris, and sister Ali holding a photo of Andrew.
Inspiration: Tom Mitchell thought he was just taking his teenage daughter Shayla to the doctor for a sinus infection. Instead, the doctor told them she had a huge cancerous tumor that had been taking up two thirds of her chest, causing one of her lungs to collapse. Shayla was diagnosed with stage 4 Hodgkin's disease and was admitted to the pediatric oncology unit, spending more than 400 nights in the hospital before she died in 2009. After grieving his daughter's death, the single dad founded StillBrave, an organization devoted to helping the families of children with cancer in the Washington, D.C. area.
Mission: StillBrave's mission is to provide non-medical, supportive care to children with cancer and their families, helping pay bills, do house and yard work, babysit and provide support to siblings, and whatever they can do to ease the family's burden.
Fund-raising: Focused on providing the support families need, Mitchell says Still Brave has raised several hundred thousand dollars over the years to fund their work. This year, the organization is on track for the biggest so far money-wise, raising more than $170,000 to fund programs like its Renegade Backpack Program, which provides a soft chenille blanket, warm hat, stuffed animal, a journal, and more for kids going through chemo, and its All-Star Siblings Project, to give siblings of cancer patients a special time. Mitchell, known as "Tattoo Tom," also ran 200 miles to raise awareness and funds to continue StillBrave's work and honor 200 children with cancer: The StillBrave 200 "I Am Somebody" 200 Mile Ultra Marathon Fundraiser took place September 11, 2015, when Mitchell ran the Tahoe 200 mile ultra marathon challenge around Lake Tahoe, California.
Pictured: Tom Mitchell made the dream of Tara Sankner, an 8-year-old with inoperable brain cancer, come true by turning her into a princess for a day in 2013. Tom with his daughter Shayla.
The Harbage-Guthrie-Crosmer Family, Karis' Cause
Inspiration: The Crosmer, Guthrie, and Harbage families' lives were turned upside down on September 1, 2014, when 2-year-old Karis Crosmer was diagnosed with leukemia. Because their friends and community were so thoughtful and generous in supporting Karis' mom Lori and dad Josh, her aunt and uncle, Marci and Brett Harbage, and grandparents, Marc and Connie Guthrie, wanted to give back and founded Karis' Cause as part of the American Childhood Cancer Organization's Founding Hope Fund.
"Often families want to help in their local community and focus on eliminating gaps in care that they personally might have experienced. Their desire is to make an immediate difference," says Ruth Hoffman, executive director of ACCO. "Families don't want to have to spend time and money to set up a separate charity and the associated administrative time required to run a charity. ACCO provides the non-profit structure which allows the families to simply devote their time and energy to fundraising in their local communities so that they can provide needed programs and services."
Mission: With Lori and Josh serving as their parent advisors, Karis' Cause is committed to providing assistance and a sense of relief to families impacted by childhood cancer until there is a cure. They are also focused on supporting pediatric cancer research at Nationwide Children's Hospital, and NCH's collaboration with The Ohio State University, in its pediatric cancer research.
Fund-raising: Karis' Cause was started with financial support from the family and a gift from The Clarke Family Foundation, and all local efforts are by volunteers. They have raised over $20,000 through sponsors and donations for its 5k events and a large rummage sale.
Pictured: Karis' aunt, Marci Harbage, and Gary Wimer, a volunteer from the organization's 5k Committee.