Rare Disease Advocates: Selling a Vision (Video)
Two parents of children with rare diseases took different paths in their drive to make a difference. Listen to their stories.
What do parents do when their child is born with a rare and potentially disease? That was the quandary that both Mark Dant and Mike Porath recently faced. Mark’s son, Ryan was diagnosed with a Mucopolysaccharidos 1 (MPS) 1, a devastating degenerative disorder that would likely kill him by the age of 10. Mike’s daughter, Annabel was diagnosed with Dup15Q Syndrome, a chromosomal disorder that can result in growth and developmental abnormalities.
Like any parent, Mark and Mike grieved but they also took action. Mark and his wife, Jeanne created the Ryan Foundation to help find a treatment for their son’s condition. Mike created a website called The Mighty, a digital platform for all people with disease and disabilities, and their families.
The fundraising efforts of the Ryan Foundation led to a treatment that has helped the Dants’ son live the life they imagined could not be possible. Not only did he survive past age 10, he graduated from college with honors, and recently completed a sport internship with the San Francisco ‘49ers. Annabel is in a sixth grade class with other kids with special needs, loves cooking and is “generally a very happy kid.”
In September, at Charles River’s World Congress on Rare Diseases in Boston, Mark and Mike sat down with Anjli Venkateswaran, Associate Director of Marketing for Charles River Global Discovery Services, to discuss their roles as rare disease advocates.
“I think folks like Mark and I, there's so many of us that are out there in the rare disease space, we really have to be like charismatic salespeople, and we're selling a vision,” says Mike. “You're selling an idea, a belief, and you're really just trying to get by, and for people to help in whatever way they possibly can.”
You can watch the entire conversation by clicking on the link above. And if you are interested in learning more about rare diseases, check out Eureka’s recent coverage of the World Congress meeting.