Little Star Center Raising Awareness: Two federal initiatives to support in 2015
“If you want to go fast, go alone. If you want to go far, go together.”…African Proverb
Liz Feld, President of Autism Speaks, shared the quote above, during the recent Autism Speaks Leadership Summit in Washington, D.C. Leadership from Little Star Center was among 200 professionals nationwide invited to attend.
She shared this quote in describing her partnership with other agencies, politicians, innovators, physicians, researchers, and advocates. The leadership summit was an opportunity to learn about the meaningful differences in state and federal policies that Autism Speaks is actively pursuing, and, more importantly, an opportunity to speak to local politicians about the necessity of supporting these laws that significantly impact individuals with autism.
The 21st Century Cures Bill is one such piece of important legislation. Autism Speaks describes this bill in more detail and contains links to additional resources. During the leadership summit, Dr. Ring, Chief Science Officer at Autism Speaks, discussed the MSSNG project (pronounced “missing”). Autism Speaks and Google are working in collaboration to complete the MSSNG project. The project will provide clinical data and 10,000 genomes of individuals affected by autism. This massive dataset will then be available to statisticians, data scientist, and researchers. It is really exciting to see what is going to come from this research. The 21st Century Cures Bill provides necessary legislation for research projects like MSSNG.
Liz Feld also indicated that the 21st Century Cures Bill will “bring regulation of the health field into the 21st century.” She further elaborated that this will include both medication and technology.
In addition to the 21st Century Cures Bill, Avonte’s law was also discussed at the summit. Tragically, Avonte Oquendo, a 14-year-old with autism, wandered away from his school in New York and was later found dead in a nearby river. In his memory, Avonte’s Law seeks to stop this from happening to other individuals with autism. Current statistics indicate that 50 percent of individuals with autism will wander away from safe areas. What is more alarming is that 42 percent of wandering incidents are fatal. Avonte’s Law will provide funding over five years to law enforcement agencies for tracking devices and training.