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Help us Find the Other 150

By: ghmc  |  July 24, 2013  | 

 Audrey Gordon, Boston, clinical trials, GLOBALHealthPR, orphan disease, Progeria, Progeria Research Foundation, Rare disease

Meet Ontlametse, left, from South Africa; Alicia, center, a PRF Ambassador; and Rafaely, right, from Brazil.

The Find the Other 150 Campaign is a joint Progeria Research Foundation and GLOBALHealthPR collaboration to locate the remaining 150 of the estimated 200-250 children living globally with Progeria.

Beginning in July and through the next several months, approximately 40 children from around the world will travel to Boston, Mass., in the United States to participate in the Triple Drug Trial, the latest clinical trial to test potential treatments for Progeria. To mark this expansion, The Progeria Research Foundation (PRF) is re-launching its highly successful “Find the Other 150” campaign to locate the remaining unidentified children living around the world with Progeria.

Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS) is a rare, fatal genetic condition characterized by the appearance of accelerated aging in children. Symptoms of Progeria include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, and cardiovascular (heart) disease, among others.

“At the launch of the campaign, we said that finding even one child would make the campaign a success, but we’ve significantly exceeded our expectations and identified nearly 50 additional children in a few short years,” said Audrey Gordon, President and Executive Director, PRF. “Our success is a testament to the power of global collaboration. We now know that through our continued global efforts, we can find even more children with Progeria to provide them with unique and essential medical services and care, and significantly further medical research to develop treatments and a cure.”

When the “Find the Other 150” campaign originally launched in 2009, only 54 children in 30 countries living with Progeria had been identified. In less than four years, the campaign has helped to:

  • Find 50 more children from an additional seven countries on five continents
  • Increase by 93 percent the number of known children with Progeria in 2013 compared to 2009

As promised, the children found now have the chance to enter potentially life-saving clinical drug trials made possible through PRF’s financial and research efforts.

“We need to continue to find as many children as we can,” said Leslie B. Gordon, Medical Director of The Progeria Research Foundation. “We now know the gene that causes Progeria and just last September announced the results of our first clinical trial and its success in slowing the progression of Progeria. With the expansion of the Triple Drug Trial and the tools we have to treat it, it’s time to find the others worldwide living with Progeria,” said Dr. Gordon.

How you can help:

Media, physicians and families around the globe can follow updates from PRF through Facebook and Twitter, and encourage others to use these pages to find out more information about providing additional assistance.

Children with Progeria have a remarkably similar appearance; images can be found at http://www.progeriaresearch.org/gallery. If someone you know or treat has Progeria-like characteristics, please contact The Progeria Research Foundation at info@progeriaresearch.org  and visit www.progeriaresearch.org for resources that will help to provide him or her the best treatment possible.

About The Progeria Research Foundation

The Progeria Research Foundation (PRF) was established in 1999 to find the cause, treatment and cure for Progeria – a rapid aging disease that causes children to die from heart disease or stroke at an average age of 13 years.  Research conducted in partnership with PRF has identified the gene that causes Progeria, a treatment and other possible treatment candidates for which clinical drug trials are in progress or being planned.  To learn more about Progeria and what you can do to help, please visit www.progeriaresearch.org.

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