Retinoblastoma International is non-profit, tax-exempt 501(c)(3) organization founded in Los Angeles and chartered as a corporation under the laws of the State of California. We focus on infant retinal cancer or retinoblastoma, and it ensuing complications.
A world in which retinoblastoma no longer destroys the vision or takes the life of any child.
To wipe out retinoblastoma and its ensuing complications world-wide through education and research.
Retinoblastoma International (RBI) was conceived in the fall of 1998. A set of concerned parents approached Dr. Linn Murphree, (Director of Ocular Oncology at Childrens Hospital Los Angeles), Nancy Mansfield, (M.A. Executive Director of the Institute for Families, an organization that provides multi-lingual consultation and therapy for families with visually impaired children), and the Vistas for Blind Children about the possibility of fundraising for this "orphan" disease. There was despair over the fact that so few people knew about this eye cancer, and anguish that even the best treatment involved horrible choices, losing an eye, or having to undergo the pain of chemotherapy or radiation. There was also the fear that once your child was fortunate enough to get through the ordeal of Rb, they would later be faced with the devastation of other secondary cancers.
Even more upsetting was the knowledge that while in the United States and other developed countries, more than 95% of the children afflicted will survive, in the developing world the opposite is true. Even the invasive treatments that we take for granted are either not available or not affordable to these children. Therefore the fatality rate is very high.
Fortunately soon after, other parents joined the effort. All parties strategized and the first MIRACLES event, honoring Rosie O' Donnell, was produced. After the success of this event, despair turned to hope and Retinoblastoma International was formed. Since then RBI has produced numerous fund-raising galas, comedy and theatrical productions, as well as golf tournaments to facilitate their commitment to their mission.
Since it inception in 1998, RBI has been committed to supporting research, education, clinical care, safer/ more effective treatments, early diagnosis and awareness. Our website. www.retinoblastoma.net provides online information to parents, family, friends, as well as medical education and hands-on training in the management of Rb to health care professionals.
In the year 2000, RBI helped pass California Assembly Bill 2185. AB 2185 promotes early and regular eye examinations for infants to detect the presence of tumors and numerous other eye problems. As a result, thousands of children could be spared from blindness and death.
Sponsoring New Legislation in the State of California
RBI worked tirelessly with California legislators on California Assembly Bill 2185 which established the New Born Eye Screening Program. This program was a great step in providing for early detection of potentially fatal eye diseases including retinoblastoma and glaucoma. The bill passed in February 2000 and requires that all infants undergo dilated pupil examination by a neonatal nurse, a primary care physician or other authorized healthcare provider during the neonatal period. State bills such as these are not easily passed, but are key in saving vision and lives. To pass AB 2185, RBI worked closely with assembly members to create awareness of and interest in the life-saving advantages of early eye exams.
Unfortunately, pediatricians are reluctant to implement this simple, inexpensive procedure. It involves the dilation of the baby's eyes at a well baby visit. Residents in training at Childrens Hospital Los Angeles (CHLA) were funded and worked in conjunction with RBI to create a formal study measuring how sensitive and specific their pupillary red-reflex testing is, when it comes to detecting early Rb. Correct diagnosis and/or detection rates were quantified. When the detection rate with dilated pupils climbs to a possible 85% as opposed to 35% in the non-dilated group, there is compelling, incontrovertible evidence that dilation in the pediatrician's office increases the likelihood that Rb and other ocular diseases will be found early. This provides the ammunition needed to convince pediatricians that this testing is imperative. More money will be needed to develop teaching materials, hold continuing medical education courses, and hopefully to fund ophthalmologists internationally for training sessions with RBI, (housing, meals, and travel) so they can be equipped to return to their countries as trainers for pediatricians and primary care physicians there.
In 2002, RBI recognized the need to improve the quality of treatment in Mexico and upgrade the equipment used to treat Rb in that country. Several initiatives were undertaken. The first was to bring a doctor to Los Angeles for additional training in the treatment of Rb and how to use modern equipment that RBI intended to purchase for the physician in Mexico. RBI funded a three-month internship for Dr. Marco Antonio Ramirez-Ortiz to train with Dr. Linn Murphree at CHLA. The training was completed in the fall of 2002.
In late 2002 RBI (with a generous donation by Cassandra Kwoh) was able to purchase a Photo Coagulation Laser for The Hospitale Infantile de Mexico that enables a physician to treat Rb tumors using a concentrated beam of heat while avoiding any damage to surrounding tissue and nerves. RBI also helped raise money to purchase a Ret Cam to go to the same hospital in Mexico. A Ret Cam is a sophisticated camera that allows a physician to photograph the inside of the eye and review the image on computer to diagnose the disease and pinpoint the areas that require treatment. In addition, the photos can be saved electronically and forwarded via email to other physicians for second opinions. In 2003, Mexico joined in on this effort and helped raise sufficient funds to purchase this camera.
And finally, the newest and extremely exciting branch of early detection lies in the field of Proteomics. Rb children may be at increased risk for developing other types of cancer in adolescence and adulthood, including osteosarcoma, melanoma, and others. The Proteomics Fund has been created to promote early detection of secondary cancers that can occur in some survivors of Rb. Retinoblastoma is the first tumor currently being studied in this landmark program in association with RBI at USC. When this work is successful, proteomics-based early detection will be extended to other childhood cancers. The impact of this program alone could be enormous!
Please help us accomplish our mission by donating to Retinoblastoma International.