RettSyndrome.org
 

For Immediate Release, November 3, 2014

Contact: Shannon Starkey-Taylor, Chief Operating Officer, Rettsyndrome.org
sstarkeytaylor@rettsyndrome.org

Rettsyndrome.org Welcomes New Members to Board of Directors

 

(Cincinnati, OH) – Rettsyndrome.org proudly welcomes Peter White and Scott Parven to the Board of Directors to support the mission of accelerating research of treatments and a cure for Rett syndrome and related disorders.

White and Parven join the board at an exciting time for Rett syndrome research. Rettsyndrome.org recently announced a cooperative agreement to fund research for the Natural History Study, a Research Consortium, led by Alan K. Percy, MD, University of Alabama at Birmingham, to investigate b the correlates of disease severity in Rett syndrome and related disorders.

“The potential for developing effective clinical trials is now tangible with other disease-modifying agents rapidly coming to the clinics,” said Percy.

Peter White, Chairman and Cofounder of Attention Span Media and Chairman and Cofounder of Global Outsight, recently joined the board in 2014. Peter is recognized as a leading strategic business executive in the marketing and entertainment fields. Most recently, he has focused his professional and personal time on building successful enterprises and organizations, including for‐profit and non‐profit.

Attention Span Media has been responsible for developing new business strategies, marketing campaigns and social and digital strategies for clients in various industries, with a strong presence in tourism, entertainment, education, retail and sports. As Chairman of Attention Span Media, Peter and his team were deeply involved in the new branding, website, and social media and marketing materials and strategies implemented by Rettsyndrome.org in 2014.

“Peter has already proven to be a powerhouse for the foundation with his work on the recent redesign of the Rettsyndrome.org website as well as gift campaign materials. His quick action and effortless expertise will undoubtedly propel every aspect of the new brand for Rettsyndrome.org,” said Starkey-Taylor, COO.

Scott Parven, Partner at Akin Gump, has notably been affiliated with centrist Democrats for his entire professional career and has developed close relationships with members of Congress and staff in driving market-based solutions to public policy problems.

Prior to joining Akin Gump, Parven was the founder and president of Parven Pomper Strategies (PPS) Inc.  Parven’s political acumen and policy advice have earned him accolades from numerous publications, including “Best In The Business” by The Hill newspaper and National Journal magazine. In 2010, he was named to the board of the Democratic Leadership Council.

Before founding PPS, Parven served as head of international public policy at Aetna, where he helped the company transform into a global financial services leader through his work with foreign governments, the U.S. Congress, the White House and other dignitaries. Parven led the effort to build Aetna’s company relationships throughout Asia and Latin America. His successes in establishing public-private partnerships across the globe earned him Aetna’s most distinguished award for executives—Aetna Chairman’s Award for Extraordinary Service.

“I believe that Scott will quickly become a tremendous asset to the Board of Directors,” said Rajat Shah, Chairman of the Board of Directors. “His relationships and connections within the world of politics will help Rettsyndrome.org build the network needed to propel our activities on the hill.”

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ABOUT RETT SYNDROME
Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to lifelong impairments, affecting nearly every aspect of child’s life: their ability to speak, walk, eat is effected, seizures develop and scoliosis occurs, and many develop irregular breathing patterns. Those diagnosed with Rett syndrome require maximum assistance with basic daily activities. The hallmark sign of Rett syndrome is near constant repetitive hand movements. Cognitive assessment in children with Rett syndrome is complicated, but they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.

ABOUT RETTSYNDROME.ORG
Rettsyndrome.org is the most comprehensive nonprofit organization dedicated to providing information and family empowerment while accelerating research of treatments and a cure for Rett syndrome and related disorders.  As the world’s leading private funder of Rett syndrome research, Rettsyndrome.org has funded over $34M in high-quality, peer-reviewed research grants and programs to date. The organization hosts the largest global gathering of Rett researchers and clinicians to establish research direction for the future.  Rettsyndrome.org, a 501(c)3 organization,  has earned Charity Navigator’s most prestigious 4 star rating year after year.  To learn more about our work and Rett syndrome, visit www.rettsyndrome.org or call (800) 818-7388 (RETT).