The Examiner interviewed Raymond Rodriguez-Torres, founder and chairman of Live Like Bella (LLB), a pediatric Cancer foundation dedicated to research, treatment, and memorial support in South Florida. Raymond started the foundation after he and his wife Shanna lost their 11-year-old daughter, Bella, to Cancer. Bella defied all odds by surviving Cancer for many year after it suddenly entered her body in the form of a large tumor on her spine – effectively paralyzing her. She also had seven other tumors spread out throughout her body.
The survival rate for the majority of the major types of childhood Cancers has remained virtually unchanged in the last 30 years.
Raymond Rodriguez-Torres, founder and chairman of the Live Like Bella Cancer foundation
Bella was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma, an aggressive childhood Cancer. Her prognosis was dire. Medical experts across the globe agreed that Bella had only a few months to live and definitively said she would never walk again. But Bella and her family had a different prognosis. With intense treatments and prayers from all around the world, she miraculously regained her ability to walk, run and jump and went into remission when it was never thought possible. Bella courageously fought Cancer six times until her death on May 28, 2013.
Her big brown eyes, infectious smile, determination and innocence touched thousands across the globe. Bella’s miraculous and inspiring life was documented in the bestselling book titled “Why Not Me?”
In the United States alone, each day seven children die of Cancer.
Here are excerpts from the interview:
The Examiner: What exactly does the LLB Foundation do on a daily basis?
Raymond Rodrigues-Torress: LLB works with many doctors to fund the most innovative childhood Cancer research anywhere in the world. Additionally, LLB assists families that have a child currently under Cancer treatment and lastly, we provide memorial support by paying for headstones or funerals for families that have lost a child to Cancer. In addition, we are working in partnership with Nicklaus Children’s Hospital and Ronald McDonald House Charities of South Florida to build a new facility: The LLB’ Pavilion on the campus of Nicklaus children’s Hospital will provide housing for families of sick children. LLB has also partnered with Baptist Health of South Florida and provided funding for the LLB’ Pediatric Proton Radiation program and Pediatric radiation gantry at the Miami Cancer Institute.
Examiner: How is this different from other Cancer foundations?
RRT: LLB is unique in that with the assistance of our Scientific Advisory Board, we fund research at multiple institutions at one time. We are not limited to funding research for children with Cancer at only one place. We feel that Pediatric Cancer can strike anywhere, therefore we fund Pediatric Cancer everywhere where there is research of scientific merit that could benefit children battling Cancer. Additionally, we are the only Pediatric Cancer foundation that we are aware of which funds headstones, burials and funerals of children that have passed from Pediatric Cancer. Lastly, we are working with the Pharmaceutical/Biotech industry and our elected officials both locally and in Washington DC on a Federal bill: “The Childhood Collaborations Act,” also known as “The Bella Bill.”
Examiner: What is the survival rate for children who have Cancer?
RRT: The survival rate for the majority of childhood Cancers has remained virtually unchanged in the last 30 years.
Examiner: How many children die a year from Cancer?
RRT: In the United States alone, each day seven children die of Cancer.
Examiner: How does LLB plan to change policy in Washington?
RRT: “The Childhood Collaboration Act,” seeks to level the playing field in Cancer research to include Pediatric Cancers when new medications are in development for adult Cancers. The “Bella Bill” requests that the pharmaceutical & biotech industries test all new Cancer drugs intended for adults on the 12 major childhood Cancers and publish the data to spark innovation in drug development specifically for children.
Examiner: Can you explain how the process works now with trials and research?
RRT: Cancer research begins with the concept of curiosity and appropriate funding. The first phase is called the Pre-Clinical phase which begins in a laboratory. Once it is proven in test tubes and petri dishes, it moves to the testing of animals, primarily rats. Once the treatment is believed to be safe to try in humans, it moves to various phases of clinical trials, which is when actual humans are administrated the treatment.
Examiner: Why do you think there hasn’t been a cure for these rare pediatric Cancers?
RRT: Pediatric Cancer has unfortunately not received the level of awareness that it deserved, but thankfully it is now starting to gain proper recognition. Currently only 4% of the Federal Government’s National Cancer Institute (NCI) budget is allocated to Pediatrics and the Pharmaceutical/Biotech industry has traditionally only funded .5% of Pediatric Cancer research although it funds 60% of all adult Cancer research. Thankfully the childhood Cancer community’s voice is beginning to be heard and we expect that this will bring forth more attention, resources, research and medications developed specifically for children with Cancer.
Examiner: Why have you been able to generate the attention of the pharmaceutical companies and other politicians directed to pediatric Cancers, when your predecessors were unsuccessful?
RRT: For almost 20 years I had the privilege of working in the pharmaceutical/biotech industry. I launched many drugs and many of the most significant brands in Cancer treatment that we use today. Currently I serve as the CEO of one of the largest Home Care Providers in Miami. This experience has given me a profound understanding of the issues facing healthcare and specifically advancing Pediatric Cancer Research.
Moreover, with the help of others, we are focusing on how to to collaboratively approach the issue with a multidisciplinary approach. Above all, it was the great gift of Bella’s life and the many she inspired to get involved to stop the #1 disease killer of our children – Cancer. Bella’s life and courageous battle with Cancer inspired many in government, the pharmaceutical industry and from all walks of life to get involved and stand up to Pediatric Cancer. I feel truly humbled and blessed to play a small part in this important movement. While my family and I miss Bella terribly, I know that she is continuously with us. I look forward to the day when I see her again in heaven. I’m certain she will be proud of what we’ve done to help “her friends” battling Cancer. Until that moment comes, we will all continue to grow the foundation and we encourage everyone to raise awareness by using the hash tag #LiveLikeBella in social media to raise awareness of this critical issue and movement.
Examiner: Do you think it’s possible in our lifetime to find a cure and if so, how will LLB accelerate the process?
RRT: I feel certain that I will see Cancer in children become a curable and treatable disease in my lifetime. We and many other worthy organizations are working unceasingly towards this goal. Once the “Bella Bill” is enacted we feel we will be able to leverage the vast resources and innovation of the Pharmaceutical and Biotech industries to address childhood Cancer. I’m confident that this will speed-track innovation in drug development for children like we’ve never seen before. Working together there is nothing we cannot accomplish. I feel honored and blessed to have the support of so many in this cause.