12 Inspiring Families Raising Funds to Fight Childhood Cancer
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 12 of the inspiring families across the country who are working tirelessly to raise awareness and funds.
The Miller Family: Smashing Walnuts Foundation
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 fundraising 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.
Fundraising: 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.
The Thrailkill Castelaz Family: The Pablove Foundation
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 and improve the lives of children living with cancer through the arts. Pablove Shutterbugs, their signature healing arts photography program, has placed cameras in the hands of nearly 1,500 cancer patients across the country. Powered by Pablove, their childhood cancer research grants program, has awarded over $3 million in seed funding to the brightest minds searching for cures for our kids.
Fundraising: Since 2009, the Pablove Foundation has raised over $20 million to fund innovative pediatric cancer research and healing arts programs for children and teens living with cancer across the country.
Pictured: Pablo Thrailkill Castelaz, the foundation's namesake.
The Scott Family: Alex's Lemonade Stand Foundation
Inspiration: Just before her first birthday in 1997, Alexandra "Alex" Scott was diagnosed with neuroblastoma. While battling cancer, Alex declared—at age 4—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 their 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. 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.
Fundraising: 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.
The Sherwood Family: Arms Wide Open Childhood Cancer Foundation
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—and after witnessing the extreme suffering of other cancer families and realizing the need for less toxic treatment options for children with cancer—Dena and Billy Sherwood founded Arms Wide Open Childhood Cancer Foundation (AWOCCF). Now age 13, Billy, Jr. is a two-time stage IV neuroblastoma survivor.
Mission: The mission of Arms Wide Open 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, unite the childhood cancer community, and give all children with cancer a voice so they will see change in their lifetime. Through their annual event, CureFest, the organization aims to bring awareness to childhood cancer and make research around it a national priority.
Fundraising: Arms Wide Open hosts various events throughout the year, but also has many committed advocates, partners, sponsors, and fundraisers who hold events each year with all proceeds going to fight childhood cancer. With the help of its committed supporters, AWOCCF has funded over 80 research grants, some of which have led to life-saving clinical trials. AWOCCF has given over $1.3 million in family support, providing families hope when it is needed most.
Pictured:Two-time cancer survivor, Billy Sherwood, Jr., and his sister, Sydney, present a check for neuroblastoma research at Memorial Sloan Kettering Cancer Center in New York, where Billy was treated.
The Gorsegner Family: Infinite Love for Kids Fighting Cancer
Inspiration: The Gorsegner's daughter Natalie Grace, now 11, 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, with her family, started a 501(c)3 foundation called Infinite Love for Kids Fighting Cancer in 2013 to help provide financial grants to leading research hospitals and facilities, including—but not limited to—Memorial Sloan Kettering, Dana-Farber Cancer Institute, Yale University, and the Children’s Hospital of Philadelphia.
Mission: Infinite Love is committed to raising money to fund research efforts to find better, safer treatments for childhood cancer, as well as working to unite and support the childhood cancer community, whether it be financially or emotionally, so they know they are not in this alone.
Fundraising: Since the foundation's fundraising efforts—which focus on a different form of childhood cancer each year so that all pediatric cancers are given the attention they deserve—began in 2013, Infinite Love has helped to fulfill over $1 million in research grants. On top of raising funds for cancer research, the foundation also focuses on impacted families. Whether it's paying medical bills, sending siblings to a pro sports event, or providing emotional support, the Gorsegner family knows that the fight to end childhood cancer is personal.
Pictured: Hannah, Andrea, Dan, and now 11-year-old Natalie Gorsegner.
One Family's Experience with Childhood Cancer
The Symmes Family: Caroline Symmes Cancer Endowment
Inspiration: The Symmes family became involved in pediatric cancer research when their oldest daughter, Caroline, was diagnosed with a Wilms' tumor, the most common form of kidney cancer found in children, at the age of 3. When Caroline relapsed, they discovered there was minimal 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. That's why they started the Caroline Symmes Cancer Endowment.
Mission: The Caroline Symmes Cancer Endowment is funding Non-Central Nervous System Solid Tumor research, supporting the Precision Genomics Program by Jamie Renbarger, M.D., at Riley Children’s Health in Indianapolis. This program focuses on previously neglected, reoccurring pediatric cancers—like the Wilms’ tumor that Caroline courageously battled. The cutting-edge research is enabling physicians to move beyond just identifying the location of the cancer within the body to understanding how the cancer is interacting with the unique genetic characteristics of each child and pinpointing the safest and most effective medication for their condition. This is aligned with game-changing science and will transform how we care for kids and how we treat and classify pediatric cancers.
Fundraising: Since becoming a 501(c)3 in 2014, the Symmes have raised approximately $3 million. Every $1 raised leads to $10 more in government funding, and with only a small percentage of the federal government’s total funding for pediatric cancer research, donor support is more critical than ever. Hosting an annual gala, golf tournament, and receiving private donations and corporate funding, the family is moving quickly toward reaching their $8 million dollar goal.
Pictured: Elizabeth, David, and Sullivan Symmes at a fundraising event. Siblings Natalie and Sullivan 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 be 16.
The Moore Family: Georgia and the Peachy Keens Hero Fund at St. Baldrick's Foundation
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 over 28 months of treatment, her motto was "just keep swimming"—until she won her battle with cancer. Their Georgia and the Peachy Keens Hero Fund for St. Baldrick's Foundation was created to celebrate the fifth year past her cancer diagnosis. The Moores know they were lucky that Georgia, now in college, 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.
Fundraising: The Peachy Keens fund has raised over $175,000 to date by hosting lemonade stands, children's arts shows, a comedy night, a trivia night, and selling birthday candles on their cakes. Georgia's artwork was even used on products sold by the Property Brothers from HGTV in support of the St. Baldrick's Foundation. In 2018, the Georgia and the Peachy Keens St. Baldrick's Fellow grant was awarded to Naomi Winick, M.D., of the University of Texas Southwestern Medical Center at Dallas. The grant supports Dr. Winick's research on ALL patients.
The 46 Mommas, the group of cancer moms that Georgia's mom, Courtney, helped lead, has now raised over $2.5 million. As a foundation, St. Baldrick’s has now funded over $300 million in childhood cancer research grants.
Pictured: Trevor, Courtney, Georgia, and sister, Ivy Moore, who shaved her head for a St. Baldrick's fundraiser.
The Matthews Family: Because of Ezra
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 second 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.
Fundraising: The organization has given over $700,000 directly to patient-affecting childhood cancer research. Fundraisers 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: Kyle, Charley, and Robyn Matthews. Ezra Matthews.
The McDonough Family: The Andrew McDonough B+ Foundation
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.
Fundraising: They've raised over $35 million, much of it with the theme of "Kids Helping Kids Fight Cancer" through large fundraising 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 $2.25 million in 2019. They are also touched when children ask for donations to The B+ Foundation in lieu of birthday presents. Up next is the 14th Annual B+ Golf Outing and Dinner, to be held on October 5, 2020.
Pictured: Joe, Chris, and sister, Ali, holding a photo of Andrew McDonough.
Tom Mitchell: StillBrave
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.
Fundraising: Focused on providing the support families need, Mitchell says StillBrave has raised several hundred thousand dollars over the years to fund their work. The organization has raised 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.
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 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. Karis’ aunt and uncle, Marci and Brett Harbage, and grandparents, Marc and Connie Guthrie, founded Karis' Cause, as part of the American Childhood Cancer Organization's (ACOO) Founding Hope Fund to honor Karis’s courage and the courage of all other children like her.
"Often families want to help in their local community and focus on eliminating gaps in care that they personally might have experienced," says Ruth Hoffman, executive director of ACCO. "Their desire is to make an immediate difference. 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: The volunteers and donors of Karis’ Cause are committed to “Helping Take the Sting Out of Childhood Cancer” by providing assistance and a sense of relief to families impacted by childhood cancer. The organization has provided food and gas cards to over 300 courageous kids and their families. In addition, the group provides Thanksgiving and Christmas holiday meals to families on the oncology floor at Nationwide Children’s Hospital (NCH) in Columbus, Ohio. Karis’ Cause also sponsors outings to Build-A-Bear and other safe places for families to take their children.
Fundraising: Karis' Cause was started with financial support from the family and friends, as well as major gifts from a family foundation and Three Bags Full, a children’s consignment organization in Ohio. Karis’ Cause has raised over $250,000 through sponsors and individual donors for its annual 5K. Because of COVID-19, the 2020 5K is virtual throughout the month of September; to date, nearly $74,000 has been donated in support of the event.
Pictured: Ma'Miya, who's been helped by Karis' Cause.
The Rao/Bhakta Family: Pajamas With Love
Inspiration: Priyanka Bhakta was diagnosed with acute lymphoblastic leukemia, the most common type of childhood cancer, at the age of 4. After more than two years of treatment—including 8 months of aggressive chemotherapy—and a year in remission, Priyanka lost her battle with the disease at 8 years old. To honor her memory, her mom, Leela Rao, founded the children’s clothing brand Pajamas With Love in 2019. Why? "She disliked the institutional pajamas she was given and insisted on bringing her own pajamas to the hospital," Rao says. "They reminded her of home, where she was happy, safe, and comfortable. Wearing them gave her a sense of hope that she would be home soon."
Mission: Beyond just making their pajamas a staple for all kids, Pajamas With Love wants to help families battling childhood cancer—and support research to find a cure.
Fundraising: Because pediatric cancer research does not receive the same level of funding as adult cancers, Pajamas With Love donates 50 percent of its profits to the Leukemia & Lymphoma Society for pediatric cancer research.
Pictured: Priyanka Bhakta.