Posts Tagged ‘Progeria’

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

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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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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