Posts Tagged ‘Progeria’

Lauren Harris
Lauren
Holbrook Harris

A Race Against Time: Finding a Treatment for Progeria

Thursday, April 28th, 2011

This week, Lauran Neergaard (AP) reported on a topic near and dear to our hearts: the fight to find – and fund – treatments for rare diseases. Our client, The Progeria Research Foundation, was mentioned as an example of an organization striving to find a treatment for the rare, rapid-aging disease in children, Progeria. While full of personality, children with Progeria die from heart attacks or stroke at an average age of 13, so the clock is ticking to find a way to help these children during their short lives. As Neergaard mentions, clinical trials are currently underway through a partnership with Merck and a treatment for this disease could help more than just the estimated 150 children with Progeria around the world – the protein that causes Progeria may play a role in the heart disease that affects millions of aging Americans.

We are honored to work with this exemplary organization and will continue to do our part by raising awareness of Progeria and PRF’s research journey as the organization works day and night to find a treatment for these children. To support PRF in their mission, please click here.

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jseng
John
Seng

Winning For Rare Disease Research

Thursday, March 10th, 2011

I learned several weeks ago that I’m to receive the Genetic Alliance “Art of Reporting” Award in June for Spectrum’s work on behalf of The Progeria Research Foundation‘s (PRF) “Find the Other 150”  campaign. I want to publicly thank Genetic Alliance for recognizing this campaign and our commitment to such a rare disease.

Progeria is a rare, rapid aging disease in children and our client, PRF, is working to find a treatment and cure for this disease. As of October 2009, experts estimated that there were approximately 150 unidentified children with Progeria around the world. Spectrum and our global partners, GLOBALHealthPR, teamed up with PRF to launch a global communications effort to find these 150 children.

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Posted in Awards, Disease Awareness, Progeria
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jseng
John
Seng

The Dr. Oz Show To Bring Mass Exposure To Rare Disease

Wednesday, February 24th, 2010

Yesterday, we accompanied our pro bono client, The Progeria Research Foundation (PRF), to a taping of The Dr. Oz Show at NBC Studios in New York. You know, 30 Rock.

(l-r), Genetics Expert Jeffrey Innis, MD, PhD, Mott Children’s Hospital, University of Michigan; Television’s Dr. Oz; John Seng, President, Spectrum

(From left to right) Genetics Expert Jeffrey Innis, MD, PhD, Mott Children’s Hospital, University of Michigan; Television’s Dr. Oz; John Seng, President, Spectrum

Spectrum has worked closely with PRF since 2003 to raise awareness of Progeria, a rare, and thus far incurable disease that causes rapid aging among children. Most children live no longer than 20 years. (more…)

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Lauren Harris
Lauren
Holbrook Harris

Technology Brings Global TV Interview Closer to Home: Skype™ Saves the Day

Tuesday, December 22nd, 2009

The ever-changing world of technology is giving new meaning to the old adage, “It’s a small world after all.”  We recently learned how versatile SkypeTM can be for conducting international media interviews. And why not? The free software is very popular among those who want to catch up and stay in touch with family and friends virtually from around the world.

In October, John Seng blogged about the launch of the “Find the Other 150″ campaign, a global quest to find the undiagnosed children with Progeria, led by The Progeria Research Foundation, in partnership with Spectrum’s GlobalHealthPR partners.  With any campaign, there’s usually a logistical challenge to overcome when participating in a face-to-face broadcast interviews that’s a plane ride away.  A global campaign – well, that takes it to a whole new level — as we’ve recently found out with an inquiry from South Africa. (more…)

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jseng
John
Seng

An All-Around Winning Candidate

Thursday, July 9th, 2009
NIH Director Nominee Francis Collins, MD, PhD
NIH Director Nominee Francis Collins, MD, PhD

Many are applauding President Obama’s nomination of Dr. Francis Collins as the next director of the National Institutes of Health, and I join them in that applause.

I’ve been privileged to meet and work with Dr. Collins on several occasions in the past seven years. Spectrum helped him and the Progeria Research Foundation announce their discovery of the gene that causes Hutchinson Gilford
Francis Collins announces discovery of the gene responsible for Progeria at 2002 Washington press briefing

Collins announces discovery of the gene responsible for Progeria

progeria syndrome, or Progeria, at a 2002 National Press Club briefing.

Progeria is the disease that causes premature aging in children. Children with Progeria die at an average age of 13 from atherosclerosis. Dr. Collins’s passion for these children and their families, as well as for all his pursuits and accomplishments in science have set him apart in my view as one of the best to lead the world’s premier medical research organization.

Dr. Collins is distinct not only for his research and passion for Progeria, but also in the way he has treaded the waters of the sometimes heated debate between science and faith. A White House press release noted that Dr. Collins has a “longstanding interest in the interface between science and faith,” which he discusses in his book, The Language of God: A Scientist Presents Evidence for Belief – an interesting read.

With such a diverse background, as well as his many accomplishments – he was awarded the Presidential Medal of Freedom in November 2007 and elected into the Institute of Medicine and the National Academy of Sciences – I’m confident that Dr. Collins is committed to promoting scientific integrity and revolutionary scientific research, but will do so with respect to the multitude of complex issues and viewpoints.

I’ve been to the NIH campus countless times. It’s large – plenty of room for the growing support of new and exciting research and a continued respect of various opinions. Mr. Obama’s nominee is truly good news, and let’s hope for a speedy confirmation process.

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