Progeria Research Foundation Interview
The Progeria Research Foundation is spearheading the search for a cure.
Progeria is an ultra rare genetic condition. Children with Progeria age extremely rapidly and usually die within 20 years. Before the turn of the millenium, almost nothing was known about the disease, which is also called Hutchinson-Gilford syndrome.
Find out how you can help fund research that drastically improves the quality of life of Progeria children.
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June 25, 2021
The Progeria Research Foundation: Making Progress Toward The Cure
#254 Great.com Talks With… Progeria Research Foundation
Progeria is an ultra rare genetic condition that affects approximately 400 people around the world at the moment. Children develop symptoms by the age of around 2, when they stop growing but begin rapidly ageing, before tragically dying of heart disease in their teens. In this episode we talked with Audrey Gordon from the Progeria Research Foundation about the importance of developing treatments and eventually a cure.
What Has the Progeria Research Foundation Already Achieved?
The Progeria Research Foundation came to be in 1998, when Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam had Progeria. Back then, very little was known about the condition.
They have made huge progress since then. The Foundation started their first drug trial back in 2007, and among several other young adults who are living into their 20s, a girl from that trial has just celebrated her 21st birthday. To put this in context, without treatment, the life expectancy for a child with Progeria is 14 years old, but with the treatment known as Zokinvy, children and young adults are living longer, healthier lives. One of the drugs the Foundation researched is now approved by the FDA (the US Food and Drug Administration) and readily available by prescription in the US.
Audrey explains that collaboration is at the core of Foundation’s work. With such a rare condition, it’s incredibly important that researchers pool their resources. That’s why the Progeria Research Foundation runs frequent Scientific Workshops. These attract hundreds of people from around the world, some of whom are dedicating their professional lives to this rare disease.
Listen to the whole interview to find out why awareness and supporting the families of Progeria patients is so important. The Progeria Research Foundation also welcomes donations.
Want to learn more about the Progeria Research Foundation? You can check out their news section and follow them on Facebook, Instagram and Twitter.
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