Research + Education

Testing and Education

• The Fourth Annual South Florida Genetic Testing and Education Fair. In four years, almost 400 people from all backgrounds have received free testing resulting in an unanticipated detection rate of more than 20% for at least one of six fatal children's diseases (Tay-Sachs, Canavan, Cystic Fibrosis, Familial Dysautonmia, Gaucher's, Niemann-Pick)
• Platinum Sponsor with Scripps Florida of the Inaugural Florida Biosciences Career & Education Expo including an educational curriculum and DVD, classroom presentations at area high schools and a new internship program.
• Seventh Pediatric and Genetic Nursing Scholarship awarded. These scholarships have assisted four South Florida Colleges including Florida Atlantic Univeristy, Florida International University, and Nova Southeastern University.
• A Joint Pediatric Genetics Residency & Fellowship - a unique collaboration between the University of Miami's Medical Genetics Center and Miami Children's Hospital Brain Institute and Clinical Genetics.

• The National Research Initiative, co-founded by the Mathew Forbes Romer Foundation, continued to reach new milestones:
• Exceeded $700,000 in funding from our network with the National Tay-Sachs and Allied Diseases Association (NTSAD) leading to an additional $2 million in federal funding.
• More than 40 scientific and medical experts worldwide united for a major National Institutes of Health (NIH) workshop to study brain function, malfunction and potential therapies.
• A Research Roadmap was established for programs across Basic Research, Proof of Science, Animal Trials, Clinical Trials, and Commercial Availability.
• 13 of the 26 programs are moving toward Clinical Trials and Commercial Availability