“An Evening of Sweetness & Laughter” and its prestigious “See the Light” Awards Ceremony will recognize three individuals from academic institutions throughout Florida, who have led critical initiatives dedicated to the caring and curing of children’s genetic diseases of the brain. The honorees are:
Dr. Thomas J. Conlon: Director, Powell Gene Therapy Center Toxicology Core, University of Florida College of Medicine;
Dr. Marlaine Smith: Dean, Christine E. Lynn College of Nursing, Florida Atlantic University; and
Dr. Ora Strickland: Dean, Wertheim College of Nursing and Health Sciences, Florida International University.
Dr. Conlon is renowned for ensuring the safety of Gene therapy as the final approval before clinical trials. Due to the diligence of his toxicology team, a major safety risk was averted which in turn increases the probability of successful upcoming clinical trials with affected children. Additionally, Drs. Smith and Strickland currently head innovative nursing school programs at their respective universities and have partnered with The Mathew Forbes Romer Foundation for the education and care portion of its mission.
“This year’s honorees each individually speaks to the importance of both research and education as we as we converge on finding a cure for Tay-Sachs and other children’s genetic diseases,” said Kevin Romer, president of The Mathew Forbes Romer Foundation.
The event will also serve as an opportunity to introduce a new Nursing Pilot program developed with The Mathew Forbes Romer Foundation, Florida Atlantic University and Florida International University. As part of the pilot program in Palm Beach County and Dade County, nursing students will be placed in homes, where they will assist families with affected children. The nursing students will help the families with care plans and support as part of their clinical training.
“There continues to be a shortage of nurses within in-home care,” added Romer. “For those families dealing with the medical and emotional strains that caring for a child with a genetic disease brings, having a nurse with the right training and compassion in the home just a few hours a week can be life changing.”
Traditionally, the event’s “Sweetness and Laughter” theme, which will be delivered by The Capitol Steps and their latest “Fiscal Shades of Gray” satire show, symbolizes how laughter is an important way of coping with the devastating impact of genetic diseases of the brain on these sweet children and their families.
About The Capitol Steps
The Capitol Steps began as a group of Senate staffers who set out to satirize the very people and places that employed them. The group was born in December, 1981 when some staffers for Senator Charles Percy were planning entertainment for a Christmas party. Since they began, the Capitol Steps have recorded over 30 albums, including their latest, Fiscal Shades of Gray. They've been featured on NBC, CBS, ABC, and PBS, and can be heard four times a year on National Public Radio stations nationwide during their Politics Takes a Holiday radio specials. Learn more at http://www.capsteps.com/
About The Mathew Forbes Romer Foundation
Inspired by the strength of Mathew Romer, who lost his eight-year battle with Tay-Sachs disease in 2003, The Mathew Forbes Romer Foundation (MFRF) was founded in South Florida 15 years ago with a mission to promote and lead critical awareness, testing, counseling, and research initiatives that hold promise for the prevention and eventual cure of fatal children's genetic diseases of the brain.
Since being launched, the Foundation has:
Co-Founded the National Research Initiative with the National Tay-Sachs and Allied Diseases Association (NTSAD);
Helped raise almost $3M of funding, which has supported over 40 research projects related to Tay-Sachs Disease and been complemented by over $7M of federal funding to use towards work with the National Institutes of Health;
Hosted countless genetic testing and education fairs around South Florida and reached more than 1,000 people through screening efforts;
Expanded screening panel to include 18 genetic disease tests (three times as many than when the MFR Foundation was founded);
Created and grew over 25 pediatric nursing scholarships across five colleges and universities;
Partnered with numerous organizations in South Florida and nationally to drive its mission.
The MFRF is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association (NTSAD) and a member of the Jewish Genetic Disease Consortium. In addition to pioneering genetic education and screening fairs in South Florida, MFRF co-founded the NTSAD National Research Initiative in 2002. For more information, visit www.mfrfoundation.org.
About National Tay-Sachs & Allied Diseases Association (NTSAD)
NTSAD is one of the oldest patient advocacy groups in the country. With a focus on funding research, the NTSAD has supported thousands of individuals and families from many backgrounds and ethnicities who have been or are affected by Tay-Sachs, Canavan and related genetic diseases around the world. Today, NTSAD is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support. The programs and services offered by NTSAD fall under three categories: Family Services, Research and Advocacy. Learn more at www.ntsad.org.