Foundation is Focused on Education & Research of Children’s Genetic Diseases of the Brain; Event Celebrated Honorees from Florida Atlantic University, Florida International University and the University of Florida

Boca Raton, FL, March 20, 2014: The Mathew Forbes Romer Foundation (MFRF) celebrated its 15th anniversary with “An Evening of Sweetness & Laughter” on March 2, 2014 at the Broward Center for the Performing Arts in Fort Lauderdale, Florida. The event, which raised more than $66,000 for the Foundation and its efforts, included a matinee show; the “See the Light” Awards Ceremony honoring three leaders of the fight against children’s genetic diseases of the brain; as well as dinner and dessert.

“An Evening of Sweetness & Laughter” and its prestigious “See the Light” Awards Ceremony recognized 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.

“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 honorees were:

  • Dr. Thomas J. Conlon: Director, Powell Gene Therapy Center Toxicology Core, University of Florida College of Medicine. Director, Powell Gene Therapy Center Toxicology Core, University of Florida College of Medicine. 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.
  • Dr. Marlaine Smith: Dean, Christine E. Lynn College of Nursing, Florida Atlantic University. Dr. Smith is leading the innovative nursing school program at FAU in Boca Raton and is a key partner to the Foundation as it rolls out the Nursing Pilot Program. Her contributions to nursing can be primarily grouped in two areas: developing knowledge related to processes and outcomes of healing, specifically touch therapies, and analyzing, extending and applying existing nursing theories. Her work in theory development includes concept analyses, testing and extending nursing theories, meta-theoretical commentaries, and developing and evaluating models of theory-guided practice.
  • Dr. Ora Strickland: Dean, Wertheim College of Nursing and Health Sciences, Florida International University. Dr. Strickland is leading the way at FIU in terms of rolling out the Nursing Pilot Program with the Foundation. Dr. Strickland served as Professor in the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, Georgia. She is the first person to hold an endowed professorship at the School, the Independence Foundation Research Chair.

“The 15th Anniversary of the Mathew Forbes Romer Foundation was a very touching and important event for moving healthcare and research forward in the area of Tay Sachs disease and neurological disorders in children,” said Dr. Strickland. “The Foundation itself is really the light that is making a real difference in the lives of these children and their families.”

The event also served 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 are being placed in homes, where they are assisting families with affected children. The nursing students will help the families with care plans and support as part of their clinical training. This pilot program is a natural progression from the many nurses who have received scholarship money from the Foundation in past years. The Mathew Forbes Romer Foundation strongly believes in the importance of preparing nurses for in-home care, where many children with fatal genetic diseases need to be cared for continuously.

“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.”

“We are very excited about the potential of this program and ultimately expanding it to more families in South Florida,” added Dr. Smith. “From an academic standpoint, this program is invaluable to our students as they have the opportunity to learn so much from the families and parents who have been acting as primary caregiver for years. From a health care perspective, home care is the future of nursing and the at-home and community-setting care experience is more critical than ever.”

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; and
  • 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.

Hi-resolution images: https://www.dropbox.com/sh/fbovhdadl4p2gvd/Eeo_7pA9au

Captions:

DSCF3827.JPG: The Fernandez Family: Alex, Gilda and Cristian Fernandez
DSCF3826.JPG: Former Congressman Ron Klein, Lisajane Romer, and Kevin Romer (president of the Mathew Forbes Romer Foundation)
DSCF3825.JPG: The Mathew Forbes Romer Foundation board and committee members
DSCF3820.JPG: Kevin and Lisajane Romer
DSCF3818.JPG: See the Light Award Honorees Dr. Marlaine Smith (Dean of FAU’s Christine E. Lynn College of Nursing), Dr. Thomas Conlon (Director, Powell Gene Therapy Center Toxicology Core, University of Florida College of Medicine), and Dr. Ora Strickland (Dean, Wertheim College of Nursing and Health Sciences, Florida International University)
DSCF3817.JPG: Kevin and Lisajane Romer and the See the Light Award Honorees Dr. Marlaine Smith (Dean of FAU’s Christine E. Lynn College of Nursing), Dr. Thomas Conlon (Director, Powell Gene Therapy Center Toxicology Core, University of Florida College of Medicine), and Dr. Ora Strickland (Dean, Wertheim College of Nursing and Health Sciences, Florida International University)
DSCF3790.JPG: Table at 15th Anniversary Dinner, Show and Awards Ceremony, The Mathew Forbes Romer Foundation

Contact:
Melissa Perlman
BlueIvyCommunications
561-310-9921
melissa@blueivycommunications.com