LEADERSHIP //

Our Focus is Education & Research of Children's Genetic Diseases of the Brain

MFRF has provided leadership and raised approximately $2.5 million of funding for projects spanning its mission and vision across three pillars: Research of Treatments and Cures, Education and Genetic Screening, and care through Nursing School Educational programs.

MFRF has celebrated wonderful progress in education, genetic testing, and gene therapy patient trials for many affected children and families with fatal genetic diseases of the brain

Officers and Board of Directors

Kevin Romer*

  • President, Mathew Forbes Romer Foundation
  • Vice-President: Certara Simcyp Biosimulation Division
  • Managing Member of A.J.M. Bio Consulting
  • Past-President: National Tay-Sachs and Allied Diseases Association

Lisajane Romer*

  • Secretary / Treasurer, Mathew Forbes Romer Foundation
  • Sr. Product Manager for Motorola Solutions
  • Secretary, National Tay-Sachs and Allied Diseases Association

Linda Meran. Esq.

Vice President of Community Outreach

Carl Meyers**

  • VP Growth & Development
  • Former President, Corporate Media Communications, Inc., NYC;
  • Former VP Broadcasting, National Hockey League & Services, NYC

Monica Gettleman

Past Director of Family Services, National Tay-Sachs and Allied Diseases

Pablo Meles, Esq.

Pablo Meles P.A. Intellectual Property and Technology Law

Carole Romer

Former Vice President of B’nai B’rith Women International

Allan Spiro

Team Leader Keller Williams

Edward M. Yorke, Esq.**

  • Former Managing Director Lazard, Ltd.
  • Member, Board of Trustees, Hospital for Special Surgeries, NY

Richard Gold, Emeritus

Former Executive Vice President, Promise Healthcare Corporation

Larry Lemanski, PhD, Emeritus

Provost and Vice President for Academic Affairs, Texas A&M University

Lois Siegel *, Emeritus

Medical / Scientific Advisory Board

Mislen Bauer, MD, FACMG

Director, Medical Genetics Miami Children’s Hospital

Richard Bennett, DO, FAPP

Partner, Pediatric Associates

R. Rodney Howell, MD, FAAP, FACMG

  • Emeritus professor and chairman of pediatrics
  • Emeritus member of the Hussman Institute for Human Genomics at the
  • University of Miami Miller School of Medicine
  • Founding chair of the congressionally-mandated Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

Marcella M. Rutherford, Ph.D., M.B.A., M.S.N., R.N

Dean of the Nova Southeastern University Ron and Kathy Assaf College of Nursing

Marlaine C. Smith, RN, Ph.D.,AHN-BC, FAAN

Former Dean of the Chrstine E. Lynn College of Nursing, Florida Atlantic University

Neal Weinreb, MD

Director, University Research Foundation for Lysosomal storage Diseases

Anne Boynkin, Ph.D.

Emeritus

Stuart Horowitz, Ph.D.

Emeritus

Shane Palmer, MS, CGC

Emeritus

Anwar Vardag, MD

Emeritus

Advisory Board

Lori Baron

CEO of Baron Delivery on Demand

Joan Deoul, Esq.

Retired global contracts attorney

Neil Eisenband, CPA

Dorie Grizzard*

Fmr. Congressman Ron Klein, Esq.

Partner Holland & Knight Law Firm

Judy Levis Krug

Rabbi Dan Levin

Senior Rabbi Temple Beth El of Boca Raton

Oralea Marquardt

  • President of National Tay-Sachs and Allied Diseases
  • Masters of Social Work and Youth Grief Counselor

Lisa Math B.S.,CRPS-F

Co-Director, Family S.T.A.R. & United Families for Children’s Mental Health Network Family Network on Disabilities

Jeff Romer

Business Development at Adobe

Honorary Board

Karen Bomber

Amy Brand

Victoria Bronfman

Matt Cave

Walter Collins

Chris Dardet

Frank Friedland*

Shelley Friedland*

Carly Gettleman

Cliff Marks

Eli Math

Harry Meran**

Ellen Meyers

Roberta Meyers**

Bob Nichols

Jill Morgenstein

Janet Oppenheimer

Richard Robbins, MD

Ellie Robbins

Neal Roher, Esq.

Alexis Romer

Mindy Romer

William Romer**

Steve Rosner

Eric Schiffer

Eileen Segal

Mike Siegel

Tara Siegel

Daniel Vargas*

Jamie Weinstein

*affected families
**deceased

|| OUR STORIES ||

MFRF has celebrated

wonderful progress in gene therapy patient trials, education, and genetic testing for many affected children and families with fatal genetic diseases of the brain. Still, there is so much more to do, including earlier detection and expanding treatment availability.

Evie

To lose her first child, Evie, ...
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Nicholas

Nicholas was unable to produce critical ...
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Mathew

Mathew was born to Kevin and ...
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Brooke

Brooke was born in 1996 with ...
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William

Back in 2014, the Marquardt family, ...
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Nicole

Nicole Friedland was born a long ...
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Eli

Eli was deeply loved and cared ...
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Cristian

Born a healthy and vibrant boy, ...
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Jordan

On September 17, 2019, after years ...
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Kevin Michael

Kevin Michael Vargas, born to Daniel ...
Read More

Ready to make an impact?

MFRF has celebrated wonderful progress in gene therapy patient trials, education, and genetic testing for many affected children and families with fatal genetic diseases of the brain. Still, there is so much more to do, including earlier detection and expanding treatment availability.

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