Foundation Focused on Education & Research of Children’s Genetic Diseases of the Brain; Nursing Pilot Program Involves FAU and FIU Colleges of Nursing and Two South Florida Families
Boca Raton, FL, April 22, 2014: Fifteen years after it was founded, the Mathew Forbes Romer Foundation (MFRF), which is dedicated to promoting and leading awareness, testing, counseling, and research initiatives to prevent and eventually cure fatal children’s genetic diseases of the brain, is expanding. The organization was founded in 1999 by Kevin and Lisa Jane Romer, who lost their oldest son Mathew to Tay-Sachs disease when he was just eight years old. The Romers and their foundation, however, have done more than just raise awareness for the disease. The Foundation has raised $3M of funding to support over 40 research projects; hosted countless genetic testing and educational fairs throughout South Florida; and created and funded more than 25 pediatric nursing scholarships in South Florida.
Now in 2014, the MFRF is expanding its support for nursing by launching a Nursing Pilot Program at Florida Atlantic University in Boca Raton and Florida International University in Miami. As part of the program, which kicked off in January with an FIU nursing student in Broward County, nursing students are assigned to specific families with children affected by a genetic disease of the brain. As part of the community-based practicum, each of the nurses will spend approximately 90 hours assessing the family and getting to know the child; developing a plan of care; and teaching and counseling the family as needed. The FAU nursing student will start her assignment in the fall with a Boca Raton-based family.
According to Romer, 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,” said Kevin Romer. “We strongly believe in the importance of preparing nurses for in-home care, where many children with fatal genetic diseases need to be cared for continuously. 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,” said Dr. Marlaine Smith, Dean of the Christine E. Lynn College of Nursing, Florida Atlantic University. “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.”
“Our collaboration with the Mathew Forbes Romer Foundation is important for our student and for the family for which she is providing care,” added Dr. Ora Strickland, Dean of the Nicole Wertheim College of Nursing & Health Sciences at Florida International University. “Our student gains a better understanding of the psychosocial and physical challenges with which the family and child must cope, while the family and child receives much needed care and support. It is a win-win for all of us.”
The Marquardt family, one of the Nursing Pilot Program’s biggest supporters, was scheduled to be one of the initial families participating in the Nursing Pilot Program with FAU. Unfortunately, their son William lost his 8 and one-half year fight with Tay-Sachs disease just days before the anticipated start date of the pilot.
“We were very excited to be part the Nursing Pilot program as we understood all too well the need of quality nursing in the home,” said Oralea Marquardt, mother to William. “After diagnosis, our goal for William was to give him the best quality of life in his home environment, surrounded by family. Since his medical needs were extensive, we needed the support of quality in-home nursing in order to provide the care he required. We were approved for in-home nursing hours but many times those hours were not staffed because of the lack of nurses in this field. I looked at this program as an essential way to bridge the gap and meet the needs of families caring for children with complex medical conditions. William’s passing before the program was able to start just shows the urgency and importance of MFRF’s mission in helping families like ours.”
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 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.