Accomplishments

Almost $2 million has been raised by the Foundation since its inception in 1998… with only 5% of the money raised going to administrative costs. MFRF has provided leadership and funding for projects spanning its mission.

EDUCATION AND TESTING:
• Funding over 30 nursing scholarships with Nova Southeastern University, Florida Atlantic University and Florida International University.
• Creating nursing school training programs simulating in-home family care and focused on Pediatrics and Genetics.
• Helping re-establish the internationally renowned Lysosomal Storage Disease Clinical, Teaching, and Research Program at the University of Florida
• Hosting the South Florida Genetic Testing and Education Fairs
• Screened over 1,200 potential parents with as high as 50% detection.
• Partnering with JScreen and the Victor Center of Jack Nicklaus Children’s Hospital

RESEARCH:

• Conceived of and grew the National Research Initiative to 50 projects, $3.2 million in grants, and many promising therapies with National Tay-Sachs and Allied Diseases (NTSAD)
• Working with Florida Atlantic University Brain Institute as follow-on to State Center for Rare and Genetic Neurological Diseases
• Helped establish the Tay-Sachs Gene Therapy Consortium with a plan to get to clinical trials following successful results with mice, cats, and sheep and demonstrating critical dosage safety.
• Continues as the charter sponsor for the Medical and Scientific Sessions at the annual NTSAD Family Conference

 

 

 

SWEETNESS AND LAUGHTER GALA

Sunday, March 5, 2017 featuring Capitol Steps at the Kravis Center

SEE THE LIGHT AWARD HONOREES

Mathew Forbes Romer Foundation

 

 

Randy D. Blakely, PH.D

Joined Florida Atlantic University in 2016 as the founding Executive Director of the newly-formed FAU Brain Institute on the Jupiter campus. Some of his greatest achievements include mentoring over 180 future researchers and thought leaders from high school, to Post Doctorate, to faculty, in the approaches needed to translate basic science discoveries into models and medications to treat genetic brain disorders affecting children.

Rodney Murphey PH.D.

Dr. Rod Murphey is the Chairman of the FAU Department of Biological Sciences and Director of the Jupiter Life Science Initiative (JLSI). Dr. Murphey joined FAU as the original Director of the State Center for Rare and Genetic Neurological Diseases co-created with the Mathew Forbes Romer Foundation. MFRF supported two graduate students on Tay-Sachs and related diseases research in his lab.

Monica Gettleman

Monica Gettleman is a Director and Vice President of Family Services of  National Tay-Sachs & Allied Diseases Association (NTSAD).  With the Mathew Forbes Romer Foundation, she has collaborated on testing, educational and charitable events.

Over $1.9M has been raised by the Foundation since its inception with only 5% of the money raised going to administrative costs. MFRF has provided leadership and funding for projects spanning its mission.

EDUCATION AND TESTING:

• Funding over 25 nursing school scholarships with four South Florida academic institutions including Florida Atlantic University (FAU), Florida International University (FIU) and our newest partner Nova Southeastern University (NSU)

• Creating nursing school training programs of intensive care in the home and community with FIU and FAU and Pediatrics and Genetics training with NSU

• Accelerating the re-establishment of the internationally renowned Lysosomal Storage Disease Clinical, Teaching, and Research Program at the University of Florida

• Hosting the South Florida Genetic Testing and Education Fairs

  o Screened over 1,000 potential parents with over 20% detection

  o Partnered with the Victor Center and the Jack Nicklaus Children’s Hospital (Formerly Miami Children’s)

  o Extended our partnership with JScreen at-home carrier screening plus research to improve testing techniques

RESEARCH:

• Conceived of and grew the National Research Initiative to nearly 50 projects, $3.1million in grants, and many promising therapies with National Tay-Sachs and Allied Diseases (NTSAD)

• Spawned National Institutes of Health (NIH) grants resulting in over $10 Million toward finding a cure

• Grew the Tay-Sachs Gene Therapy Consortium out of the Research Initiative. We have a new plan with the FDA that will lead to an Investigative New Drug (IND) Application and Clinical Trials over the next year

• Continues as the charter sponsor for the Medical and Scientific Sessions at the annual NTSAD Family Conference this year in Florida

SWEETNESS AND LAUGHTER GALA

Sunday, February 26, 2016 featuring Johnny Lampert at the Seagate Country Club

SEE THE LIGHT AWARD HONOREES

Mathew Forbes Romer FoundationMr. Ron Assaf

Mr. Ron Assaf is a legend of South Florida Business and Philanthropy. He was the founder of Sensormatic Electronics Corporation and a true pioneer of the retail loss prevention industry. At Sensormatic he created a culture of caring for his employees and the community when he became a charter benefactor and advisor for the MFRF while supporting the critical care demands for Mathew Romer’s family.

Mr. Assaf transitioned his leadership skills from Sensormatic to many other organizations sharing missions and projects with MFRF. Mr. Assaf was President of the Florida Atlantic University Foundation, Chairman of the Board of The Boca Raton Hospital and the current Chairman of the Board of Trustees for Nova Southeastern University.

 

Mathew Forbes Romer FoundationGustavo Maegawa M.D. , Ph.D.

Gustavo Maegawa M.D., Ph.D. is a Professor at the University of Florida, College of Medicine, Department of Pediatrics, Div. of Genetics and Metabolism and the Director of the Lysosomal Storage Disease (LSD) Program.

The internationally renowned LSD Program collaborates with centers throughout the United States and around the world to bring advances from basic research to clinical care for Tay-Sachs and the family of related diseases. Dr. Maegawa is also a member of the Scientific Advisory Committee for the National Tay-Sachs and Allied Diseases Association.

$1.8 million has been raised by the Foundation since its inception with only 5% of the money raised going to administrative costs. MFRF has provided leadership and funding for projects spanning the theme of “Celebration of Screening” and its full mission of Education and Research.

Celebration of Screening:

  • 2000:  Created training video for 40 labs worldwide with the Tay-Sachs International Quality Control Lab.
  • 2003:  Creation of the South Florida Genetic Testing Education Fair with Genzyme Genetics and Baron Delivery on Demand. 100-200 people per year and >20% carrier detection rate.
  • 2008:  Partnership with Victor Center expanding the testing panel and frequency of events.
  • 2013:  Partnership with JScreen to explore in-home screening kits.
  • 2015:  Launching the first combined screening program: Promoting in-person fairs and in-home options to maximize participation and coverage. Created Public Service Announcement that was shown Florida’s National Cinemedia’s Theater Network.

Education and Research:

  • MFRF has funded over 22 nursing school scholarships with four

    South Florida academic institutions to support genetics and pediatrics.

  • In 2014, pioneered nursing school training of intensive care in the home and community with Florida International and Florida Atlantic Universities.
  • Since 2003, MFRF with National Tay-Sachs and Allied Diseases, conceived of and grew the National Research Initiative to 42 projects, $3 million in grants, and many promising therapies.
  • MFRF continues as the charter sponsor for the Medical and Scientific Sessions at the annual NTSAD Family Conference.
  • In 2007, helped establish the International Tay-Sachs Gene Therapy Consortium which today is driving to clinical trials. Preparing for FDA review.

 

SWEETNESS AND LAUGHTER GALA

Sunday, February 22, 2015 featuring The 40th Anniversary Private Screening of Monty Python and the Holy Grail at Cinemark

SEE THE LIGHT AWARD HONOREES

Mathew Forbes Romer Foundation

 

 

 

 

 

Bernie Marcus – Honorary Chair

Bernie Marcus is chairman of the board of The Marcus Foundation, and co-founder of theThe Home Depot, Inc., the world’s largest home improvement retailer,His company revolutionized the home improvement business with its warehouse concept.

Mr. Marcus is passionate about his vision to provide screening options for everyone, wherever and whenever people want it, at the lowest price. The Marcus Foundation has provided important funding and leadership to JScreen, the Victor Center and related projects and partnerships with which the Mathew Forbes Romer Foundation has collaborated.

Dr. Michael Kaback

Michael Kaback, M.D. is both a pediatrician and medical geneticist whose research has focused primarily on hereditary neurodegenerative disorders in children. He conceived of and pioneered the first regional, national, and international programs for the prevention of Tay-Sachs disease.

Employing unprecedented approaches to community-wide genetic education,

voluntary genetic screening, and genetic counseling, Dr. Kaback directed the first program in the Baltimore-Washington D.C. area in 1971. Since then, 2 million tests have been performed and the incidence of this tragic condition has been reduced by more than 90% in the U.S., Canada, Europe, and Israel.

Lori Baron

Lori Baron, CEO of Baron Delivery on Demand/Messenger Service, helped pioneer the MFRF South Florida Screening and Education Fairs over 10 years ago by handling medical logistics, joining our Advisory Board, and providing critical funding.

Over $1.7 million has been raised by the Foundation since its inception with only 5% of the money raised going to administrative costs. MFRF has provided leadership and funding for projects represented by the theme for the Gala…Caring and Curing.

CARING:

  • Since 2003, MFRF has funded over 20 nursing school scholarships with four academic institutions in South Florida to promote care needs for our families.
  • This year we are pioneering nursing school training of intensive care in the home with Florida International and Florida Atlantic Universities.
  • Since 2003, we have grown the South Florida Genetic Testing programs having screened over 1,000 potential parents with over 20% detection rate.
  • Our screening partnership with the Victor Center throughout South Florida expanded to include the Miami Children’s Hospital Genetics Department and Brain Institute.
  • We are beginning to work with the JScreen program promoting and offering screening for many diseases on-line and from your home.
  • Together with the National Tay-Sachs and Allied Diseases Association (NTSAD) families and caregivers are benefitting from the “Parenting a Child with Life-Limiting Illness” Film.

CURING:

  • In 2002, MFRF in partnership with NTSAD, founded the Research Initiative.
  • 41 projects and $2.9 million later in grant awards have led to over $10M of National Institutes of Health (NIH) grants.
  • This year the program received a record number of proposals from around the world.
  • MFRF continues as the charter sponsor for the Medical and Scientific Sessions at the annual NTSAD Family Conference.
  • In 2007, we helped establish the International Tay-Sachs Gene Therapy Consortium to drive to clinical trials.
  • Through gene therapy expertise from the University of Florida, we learned during pre-clinical animal treatments critical insight on proper dosing for safety and efficacy.

SWEETNESS AND LAUGHTER GALA

Sunday, March 2, 2014 featuring Capitol Steps at the Broward Center

SEE THE LIGHT AWARD HONOREES

Mathew Forbes Romer Foundation

 

 

 

 

 

 

 

 

Dr. Marlaine Smith

When it comes to caring, Dean Marlaine Smith, and her team at the Florida Atlantic University Christine E. Lynn College of Nursing, in Palm Beach County, have maintained a partnership with MFRF since 2003.  Together, we created the prototype for administering nursing scholarships focused on pediatrics and genetics. Conducted one of most well attended MFRF South Florida Testing and Education Fairs,  and are helping us to pioneer a new program moving the classroom into the home with clinical training where the students learn the needs of the patient and families while providing a much needed service.

Dr. Ora Strickland

Dr. Ora Strickland is Dean and Professor of the College of Nursing and Health Sciences at Florida International University in Miami/Dade County. She has led the launch and growth of the relationship with the Mathew Forbes Romer Foundation including the Pediatric Evaluation Lab, nursing scholarship programs, and  helping us to pioneer the new program that epitomizes the 24/7 in-home care needs of our families.

Dr. Thomas Conlon

The leader of the world- renowned Powell Gene Center Therapy Toxicology Team, at the University of Florida College of Medicine.

During our last Gala, we were celebrating the imminent plans for initiating clinical trials with children. Unfortunately, or fortunately, during the final phase of pre-clinical trials with monkeys, we discovered that too much of a good thing can be bad. Our gene therapy treatment was working too well, creating a harmful effect.

Dr. Conlon worked with the Tay-Sachs Gene Therapy Consortium to verify the findings and reproduce the toxic effects. This critical work is now the basis for redesigning a complete dosing experiment, a major step forward for gene therapy. The FDA is depending on this toxicology analysis for granting its future approvals and to support an Investigational New Drug (IND) application.

Since being launched, The Mathew Forbes Romer Foundation has:

  • Raised $1.5M toward its mission with only 5% spent on administrative costs
  • Co-Founded the National Research Initiative with the National Tay-Sachs and Allied Diseases Association (NTSAD)
  • Helped raise over $2M of funding, for the NTSAD to support over 30 research projects; Funding complemented by over $7M of federal funding from the National Institutes of Health
  • Hosted genetic testing and education fairs around South Florida. Celebrating its 11th event in 2011; Reached more than 1,000 people through screening efforts
  • The screening panel now covers 19 genetic disease tests (three times as many than when MFRF started its screening program.)
  • Funded more than 17 pediatric nursing scholarships at various South Florida colleges and universities, including Florida Atlantic University, Florida International University, Nova Southeastern University and Broward Community College
  • Partnered with numerous organizations in South Florida and nationally to drive its mission.

SWEETNESS AND LAUGHTER GALA

Sunday, February 12, 2012 featuring Cory Kahaney at Temple Beth El

SEE THE LIGHT AWARD HONOREES

Mathew Forbes Romer FoundationRabbi Daniel Levin, Temple Beth El of Boca Raton

Recognized for leading community education around genetic diseases, Rabbi Daniel Levin is senior rabbi of Temple Beth El in Boca Raton As the congregation’s leader, Rabbi Levin works to create a community where each member is inspired to lead a life of spiritual richness, meaning, purpose, and service. In 2003, Rabbi Levin helped to spread information on the newly launched MFRF South Florida Testing and Education Fairs to all couples getting married. In Feb. 2010, under his leadership, Temple Beth El became the first temple in South Florida to host the education and testing fair with MFRF and the Victor Center of the University of Miami.

 

Mathew Forbes Romer FoundationDr. Florian Eichler, Harvard Medical School & Mass General Hospital Neurology

As Principal Investigator, Clinician and Clinical Trialist for Human Studies on the Tay-Sachs Gene Therapy Consortium project, Dr. Florian Eichler will oversee the detailed experiments; supervise the research coordinator and staff; and work with co-investigators and project and data managers in executing the study. Dr. Eichler is the PI of several NIH-funded studies on neurogenetic disorders and serves on the board of scientific advisors for the National Tay Sachs and Allied Diseases Association (NTSAD).

Highlights of prior years

Research + Education

  • Co-Founded the National Research Initiative with the National Tay-Sachs and Allied Diseases Association (NTSAD)
  • Helped raise over $2M of funding, for the NTSAD to support over 30 research projects; Funding complemented by over $7M of federal funding from the National Institutes of Health
  • MFRF has developed solid partnerships with Genzyme, Tenet/West Boca Medical Center and most recently with the Victor Center for Jewish Genetic Diseases. with the Victor Center, we are not offering a screening panel with 18 tests — three times as may tests than when we began our journey.
  • Over 15 nursing scholarships have been granted to students at South Florida colleges and universities. MFRF sponsored the pediatric evaluation training lab at Florida International University’s new nursing school building.
  • MFRF partnered with the University of Miami Miller School of Medicine at the Miami Museum of Science to teach young people about DNA and how important it is to our health. The children participated in hands-on activities, including making a double helix out of candy.
  • Significant progress is being made with filling the research pipeline for potential treatments and cures.  New South Florida talent has emerged.  For example, researchers with The State Center for Rare and Genetic Neurological Diseases (CRGND), co-created by Florida Atlantic University and MFRF, have developed novel imaging technologies
  • Hoop Shoot – Dozens of kids participated in MFRF’s Hoop Shoot free throw competition in May.  The event provided some friendly, fun competition while raising awareness for genetic disease testing and research.
  • The State Center for Rare and Genetic Neurological Diseases, created with Florida Atlantic University and MFRF, has helped mobilize 30 scientists around genetic and neurological diseases.  They are studying brain synaptic dysfunction in Tay-Sachs animal models.
  • Drive Toward a Cure – Miguel Sena-Esteves, Ph.D. is the principal investigator of the Tay-Sachs Gene Therapy Consortium (TSGTC).  The Consortium consists of nine researchers from world-class institutions, including Massachusetts General Hospital, University of Cambridge in England, Boston College, and Auburn University.  The National insititutes of Health (NIH) has awarded a $3.5 million grant to the TSGTC to prepare for human clinical trials in three to four years.  This award was eagerly awaited by the NTSAD Research Initiative supporters, including MFRF, who raised nearly $600,000 to assemble the TSGTC, demonstrate treated mice can live to full life spans, and help maintain its research agenda while scientists worked to secure federal funding.Kevin Romer has been elected President of the NTSAD.  MFRF is the South Florida affiliate of NTSAD.  Kevin has been a Board of Directors member of the national association since 2000 – first as chair of the Quality Assurance Committee and then as chair of the Research Initiative Committee.
  • On February 7th, MFRF celebrated our 10th anniversary with 175 friends and family at “An Evening of Sweetness & Laughter.”  The event raised more than $60,000 toward the mission of education and research for children’s genetic diseases of the brain.  Judy Levis Markhoff was the recipient of this special “See the Light” Award, for her generous support of the Foundation since its inception and her vision and commitment to its mission have been unwavering.  Past “See the Light” honorees were also recognized for their contributions and support.
  • The Fifth Annual South Florida Genetic testing and Education Fairs were held at The Christine E. Lynn College of Nursing at Florida Atlantic University and Broward General Medical Center last fall with Genzyme Genetics.
  • To mark Biosciences Month in Florida and DNA month nationally, MFRF held its second “Make Your Own DNA Necklace” program during the Sprint Children’s Fair in March.  Hundreds of children collected their own DNA (from their saliva), to make “cool” necklaces with the help of high school biotechnology students.
  • MFRF further expanded support for the Neurogenetic Patient Registry, now tracking more than 500 children through The Miami Children’s Hospital (MCH) Brain Institute, and the Pediatric Genetics Residency & Fellowship with MCH in partnership with The University of Miami School of Medicine.
  • MFRF strongly supports The Tay-Sachs Gene Therapy Consortium integrating four research institutions worldwide.  The team has announced an unprecedented goal of reaching clinical trials for Tay-Sachs disease in three to four years and has already demonstrated that treated mice can live full life spans (1).
  • Through The State Center for Rare and Genetic Neurological Diseases (CRGND), co-created with Florida Atlantic University, researchers have pioneered the genetics behind synaptic malfunction in Tay-Sachs animal models. “As a result of the CRGND, 30 investigatiors have now crystallized around the subject of rare, genetic and neurological diseases,” accouding to FAU’s Biological Sciences Chariperson.
  • Platinum Sponsor with Scripps Florida of the Inaugural Florida Biosciences Career & Education Expo including an educational curriculum and DVD, classroom presentations at area high schools and a new internship program.
  • The MFRF Neurogenetics Data Registry to track clinical research patients at Miami Children’s Hospital Brain Institute.
  • First-ever 5K Pick up the Pace Run/Walk for a Future Free of Genetic Neurological Diseases took place April 25, 2004 to increase awareness of these diseases. Almost 200 people participated in this event raising over $35,000. The event was a collaborative effort between the Mathew Forbes Romer Foundation and the National Tay-Sachs & Allied Diseases Association.
  • The first NTSAD National Conference held in South Florida, featuring the Research and Medical Session, co-hosted and sponsored by the Mathew Forbes Romer Foundation. With Florida Atlantic University (FAU), with connections to Scripps Research Institute established the State Center for Rare and Genetic Neurological Diseases (CRGND) fostering collaboration dedicated to studying children’s genetic diseases,
  • Schools of Nursing at FAU, Florida International University, Nova Southeastern University and Miami-Dade Community College, for pediatric nursing scholarships funded with a focus on caring for children’s genetic disorders.
  • The Research MFRF funded in 2001 at the National Institutes of Health was published in the Journal of Human Molecular Genetics.
  • Speaker at South Florida launch of the US legislation titled Rare Diseases Act of 2002 with Representative Mark Foley and the National Organization of Rare Disorders (ORD)
  • Becomes a member of the Genetic Disease Foundation headquartered in New York.
  • International Genetic Testing Training Videotape and user’s manual produced with Dr. Michael Kaback (who pioneered Tay-Sachs and Quality Control) and distributed to up to 40 labs.
  • Boca Raton Community Hospital Education Seminar conducted in February focusing on education and importance of genetic testing for these rare diseases. 

SWEETNESS AND LAUGHTER GALA 10th Anniversary Gala

10th Anniversary Celebration. Saturday February 2009, in Boca Raton, Florida.

SEE THE LIGHT AWARD HONOREES

Judy Levis Markhoff:

Featuring the 10th Anniversary Honoree Judy Levis Markhoff: Adolph and Rose Levis
Foundation major benefactor and Advisory Board Member of the Mathew Forbes Romer Foundation.

Please also view the video for the honorees dating back to 2000.