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Meghan Waldron

Ambassador

Progeria Research Foundation

POSITION

Ambassador

COMPANY

Progeria Research Foundation

COUNTRY

USA

SCENE

Health

SOCIAL

LinkedIn

Instagram

Facebook

Twitter

What makes Meghan Waldron a Global Shaker?

Meghan Waldron is exactly the sort of ambassador you’d want for any organisation. She’s a thoroughly engaging speaker; enviably driven; and a popular all-rounder: a member of the track and field team, published author, first chair cello player in an orchestra.

The first-year student at Emerson College in the US also lives with an extremely rare genetic disorder called Progeria. The condition — estimated to affect just 400 people around the world — is the result of too much of the progerin protein, which causes premature aging. At 18, she’s already lived longer than most people with the disease. The average life expectancy is just 14 years.

As reported in the Boston Globe, Waldron credits her journey to the experimental medication lonafarnib, which she’s taken since clinical trials at Boston Children’s Hospital. This appears to slow issues like cardiovascular disease, but does not have an effect on other symptoms, which include stuff joints, stunted growth, loss of body fat and hair and wrinkled skin.

The clinical trials were funded by the Progeria Foundation — for which Waldron is an ambassador. A study published by the Journal of the American Medical Association in 2018 found that children with progeria in the study who took lonafarnib capsules had a “dramatically lower mortality rate” than those who didn’t take it.

Waldron comes across as a bright, loveable, exciting and excited person.

In an emotionally-charged Facebook video, Waldron’s life is charted as friends, family and teachers discuss her iron will, extreme intelligence and lust for life. “I don’t think she pays attention to the fact that she has Progeria,” her dad says. “She’s unstoppable.”

“Here life is pretty great, obviously,” Meghan said. “They’re trying to find a cure for Progeria. Lonafarnib has been proven to extend lives which is pretty amazing. It’s definitely given me more opportunities to just be me as a person.

“I feel that it’s very special and just important that there are people here who are dedicating their whole lives to finding a cure for 300-some people in the world who have this disease. I feel pretty happy to know they’re always there.”

She is also spokesperson for The Progeria Research Foundation, where she has a focus on engaging youth with events such as Hats ON for Progeria, and participating in media outreach.

The hope is that the FDA in the US will approve lonafarnib this spring, making it the the first approved drug for the disease.

Tags: Progeria, rare diseases, USA

Last updated: February 28, 2020