Brandon Moms Head to U.S. Capitol to Advocate for Children With Cancer

Brandon residents Mary Ann Massolio and Bonnie Woodworth, both moms who have experienced the loss of a child to cancer, joined more than 150 patients, survivors and their families on Capitol Hill Monday to ask Congress to continue to support initiatives to improve treatment and outcomes for children with cancer. 

The day was particularly meaningful for the Brandon moms. Massolio’s son Jay was diagnosed with lymphoma in September 1996. After a short and valiant fight, Jay died on March 9, 1997 at the age of 9. 

Woodworth‘s daughter Tatumn was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) brain tumor when she was 3 years old. DIPG is an aggressive brain tumor that sits in the brain stem and has no cure. After a difficult 5 1/2-month battle, Tatumn died on Feb. 22, 2012.

“I came to Capitol Hill because it isn’t right that treatment for DIPG brain tumors hasn't changed in 30 years and there is still no cure," said Woodworth. "The federal budget for childhood cancer research is only 4 percent of the total cancer research budget. My wish is for that to be increased. It is just the right thing to do."

This was the second annual Childhood Cancer Action Day event. The Alliance for Childhood Cancer coordinated the day in an effort to advance important legislation that will benefit the 13,500 children diagnosed with cancer each year.  

Families from 31 states attended, all armed with a deep personal connection to this disease that inspired them to travel to Washington, D.C.  to meet with their congressional representatives and ask them to cosponsor the following acts:

• H.R. 460, Patients Access to Treatments Act

This act would require insurers to charge no more than what they currently charge for non-specialty tier brand drugs. For example, if an insurer is currently charging $30 for non-specialty tier brand drugs, and 50 percent of the price of a specialty drug (e.g. for a $7,000 drug like Gleevec, $3,500 patient out of pocket), HR 460 would require the insurer to charge no more than $30 for specialty drugs.

• Walker Conquer Childhood Cancer Reauthorization Act

Developed by Sen. Jack Reed (D-RI) and Rep. Chris Van Hollen (D-MD) to expand the research of childhood cancers, improve efforts to identify and track childhood cancer incidences, and identify opportunities to expand the development and research of therapeutics necessary to treat children with cancer.

• H.R. 2058, Childhood Cancer Survivors’ Quality of Life Act

Introduced in the House by Rep. Jackie Speier (D-CA) on May 20, this legislation will provide resources for research and survivorship programs to improve the quality of life for all childhood cancer survivors, increase access to the long-term comprehensive health care services they need, and enhance understanding of the late effects of their childhood diseases and cancer treatments.

Each of these pieces of legislation has the power to make a difference in the lives of the 40,000 children treated for cancer each year, said Massolio.

“That’s why we’re here: to make sure that Congress does everything in it’s power to help the kids who are fighting cancer each and every day,” said Massolio.

Woodworth believes their trip was well worth it.

"It was a great trip and we were able to meet with seven congressional offices including Congresswoman Kathy Castor and Senator Rubio's and Bill Nelson's office," said Woodworth. "Kathy Castor was an awesome meeting and I can see she is truly sincere about efforts in childhood cancer research and healthcare and, more importantly, she is ready to act. I feel so lucky I was able to go."

Massolio is executive director of the 1Voice Foundation, a nonprofit that supports children with cancer and their families in the Tampa Bay area by connecting them with financial, emotional and educational care. 

About 1Voice

1Voice also supports the pediatric cancer research efforts led by University of South Florida physician Cameron Tebbi and is launching an initiative to open the first school in the United States for children with cancer.

IVoice programs include Club Nautilus, a program created in partnership with the Krewe of the Nautilus and the Florida Aquarium. 

The club provides educational and recreational outings offered by the aquarium for the families served by the 1Voice Foundation. In addition to funding the club, members of the Krewe of the Nautilus volunteer at all of 1Voice's family support programs and fundraisers. 

Children with cancer and their siblings also are invited by the krewe to participate in the annual Gasparilla Children's Parade, dressing like pirates and riding on the Submarine Float.

IVoice also is active in Makayla's Hands on Horses, an equine therapy program inspired by childhood cancer survivor,  Makayla, who wanted to share her love for horses with her fellow pediatric oncology friends. 

The 1Voice Foundation partnered with Quantum Leap Farm in Odessa to provide its families with the opportunity to achieve goals and overcome challenges by interacting with horses. 

Those interested in supporting the mission of the 1Voice Foundation are invited to attend the ninth annual Zignature Uncork the Cure wine tasting and silent auction Sunday, June 23 from 4 to 7 p.m. at the Tampa Club, 101 E. Kennedy Blvd., Tampa.

The event is presented by the Krewe of Zingaro and all proceeds go to the Children's Cancer Research Group in Tampa. 

The tasting will include wines from German, Italian, French and Napa wineries, courtesy of PRP Wine International, Southern Wine & Spirits of Florida and Time for Wine. 

Tickets are $50 and can be ordered by visiting the Uncork the Cure website.  

Also benefiting 1Voice Foundation, the seventh annual Quest for Hope "Ultimate Tampa Bay Scavenger Challenge" will take place Saturday, July 27 from 4 to 8 p.m. A VIP party and awards ceremony will follow from 8 to 10 p.m. at the Italian Club in Tampa.

During the scavenger challenge, teams use GPS-enabled smart phones to find venues, uncover clues and perform challenges throughout Ybor City. Prizes will be given to the quest champion, team with the best costumes, most energetic team, etc...

To register, visit the Quest for Hope website.