GENETIC ALLIANCE BY SHARON ALEXANDER, MPA The Advocacy ATLAS has over 200 tools and resources developed by parents, parent advocacy groups, condition-specific advocacy groups, disability groups and other partners. This time of year can be both exhilarating and challenging for the whole family. Whether returning to school or starting school for the first time, there are a lot of things to do and moving pieces to consider. For children with special healthcare needs and their […]
GENETIC ALLIANCE BY BRIANA MITTLEMAN As Newborn Screening Awareness Month kicks off in September, it is important we reflect on the many advocates, communities, healthcare professionals, and state programs that work everyday to improve this public health program. Yet, in September, we honor one of the many champions of change in newborn screening: parents. Newborn screening reaches nearly all of the four million babies born in the United States, with thousands of babies receiving newborn […]
GENETIC ALLIANCE BY SHARON ROMELCZYK “Freedom.” When asked to describe the experience of paragliding in one word, Chris Santacroce chose “Freedom.” Mr. Santacroce is the founder of Project Airtime (www.projectairtime.org), a nonprofit organization located in Utah that provides adapted tandem paragliding rides to kids and adults with a range of special needs, free of charge. Chris and his team have provided hundreds of individuals with the opportunity to lift high in the sky and feel […]
Genetic Support Foundation’s mission is to improve the quality of healthcare by providing up-to-date, objective genetic information to patients, providers and healthcare organizations, supporting those in need of genetic services and facilitating the adoption of best genetic practices. Dr. Jon Wolff, medical geneticist and Founder and President of Genetic Support Foundation states, “I am proud of the mission of Genetic Support Foundation and the integrity of our Board and Staff in creating thoughtful education resources […]
GENETIC ALLIANCE BY MONICA KORTSHA AND SHARON ROMELCZYK, MPA Discussing an individualized healthcare plan (IHP) with your child’s school nurse is one way you can prepare for the coming school year and make sure their special needs are addressed accordingly. With the end of the school year and summer approaching fast, it’s hard to think about anything else besides recitals, report cards, and vacations. But we all know the feeling of anticipation that comes with […]
