This story first appeared in the Information Point newsletter Our World in 2017 when the Information Point spoke with Sarah Foye about her son Adam and the short film he had recently appeared in about the Affordable Care Act.
Adam is diagnosed with Titin-related centronuclear myopathy. He is a high school student who enjoys science, computers and online gaming and hopes to have a career in computers in the future. Adam recently featured in a short film about the Affordable Care Act. Below Adam’s mum Sarah tells the Information Point about the film and why she thought it was important to get involved in campaigning at a grassroots level.
Adam has lived his whole life with a rare muscle disease known as Titin-related centronuclear myopathy. Despite managing numerous health challenges, he faces barriers head-on. We are now looking at colleges for Adam to attend – Adam has the potential to be a successful student and to have a wonderful career, however, if Adam is to go to college, he will need Medicaid support because he needs daily nursing support.
As a person with a rare, chronic health condition he knows how important access to good medical care is and this year, Adam took on a role as being a voice for others, so that their health isn’t a barrier for them, either.
When the Affordable Care Act came under threat of repeal, Adam felt the need to stand up for all people with ongoing medical challenges. When he was offered a chance to speak out on camera by BlueWave, NJ as part of an advocacy campaign, he was happy to get involved.