September Is Tay-Sachs Awareness Month

Dear Friends of the Mathew Forbes Romer Foundation (MFRF),

This Tay-Sachs Awareness Month, we reflect on a year of progress, hope, and meaningful change. Together, we’ve advanced research, raised awareness, and supported families facing Tay-Sachs and related genetic diseases of the brain.

Thank you for standing with us and helping bring us closer to a future free of these devastating diseases.

2nd Annual MFRF 5K Walk/Run

"Brain Health Hustle"

Sunday, January 11, 2026

starting at 7:30 am

South County Regional Park

Boca Raton, Florida

Save the Date

2026 Sweetness and Laughter Gala

Saturday, March 14, 2026

starting at 6:00 pm

Elegantly Renovated Ballroom at

Temple Beth El of Boca Raton, Florida

Invitations to Follow

Please continue to check our website www.mfrfoundation.org for more information on sponsorships and tickets.

The Sweetness and Laughter Gala is set to be extra special this year!

Our evening’s entertainment will feature Ricky Kalmon, renowned author, motivational speaker, and mindset expert. Known for his engaging interactive experiences, Ricky will inspire our audience to overcome limiting beliefs, reduce stress, and unlock peak performance in both professional and personal settings.

We are thrilled to honor two incredible individuals:

Jayne Gershkowitz, Rare Disease Industry Chief Patient Advocate Pioneer
State Representative Adam Anderson, Champion of the "Florida Sunshine Genetics Act"

This unforgettable night of celebration and inspiration is one you won’t want to miss!

Celebrating the progress we’ve made together this past year!

Stepping Into the New Year: 2025 Inaugural Brain Health Hustle 5K

We kicked off the year with the first-ever Brain Health Hustle in Boca Raton, FL — a 5K walk/run promoting brain health and supporting the fight against rare children’s genetic brain diseases.

For the refreshingly cool morning, we were thrilled to see over 200 participants including families and virtual runners joining from afar. A huge thank you to our sponsors, especially those who added to the experience with massages, warm-ups, healthy treats, and genetic screening.

As we look to 2026, our goal is to grow participation to 250–300 runners and supporters.

Together, we can make an even bigger impact!

A heartfelt thanks to our committee members, whose hard work and dedication brought this event to life.

Sweetness & Laughter 2025: A Night to Remember

Our annual Sweetness and Laughter Celebration on February 2, 2025, was a sold-out success — exceeding our fundraising goals to support MFRF’s mission of Genetic Screening, Nursing Education, and Research and Treatments.

Highlights included:

Celebrating our sweetness theme with a special Sweet Caroline sing-along and the Broadway show A Beautiful Noise at the Broward Center of the Performing Arts.
Honoring Dr. Matthew Goldstein, CEO of jscreen, for his co-leadership in our new multi-year partnership and his inspiring work in genetic screening.
Introducing our Annual Brain Health Hustle Walk/Run to further expand our impact.

Genetic Screening and Education

The Mathew Forbes Romer Foundation (MFRF) launched a new multi-year partnership with jscreen to significantly increase genetic screenings in South Florida. The initiative sets ambitious goals: a 25% increase in screenings in year one, 50% in year two, and double the reach by year three.

Through 25+ community screening and education events across diverse settings — including temples and religious institutions, community organizations, and physician and health networks — along with personalized care navigation, we’re creating more opportunities for families to access critical genetic screening services.

Together, we’re improving access, affordability, and awareness, driving advocacy to enhance coverage and reimbursement policies, and making genetic screening more impactful than ever before.

Research and Treatments

Groundbreaking research supported by the Mathew Forbes Romer Foundation is driving progress against Tay-Sachs and Sandhoff diseases.

A recent Nature Medicine Publication reported results from a phase 1/2 trial in nine children with Tay-Sachs and Sandhoff diseases, showing that gene therapy led to promising biochemical and clinical improvements and may help slow disease progression.

Building on this success, scientists are developing next-generation therapies for patients of all ages, with new clinical trials expected to begin in early 2026.

These advances bring us closer to transforming care — and offering families hope for a brighter future.

Nursing Education

Investing in the Future of Pediatric Care

The Mathew Forbes Romer Foundation (MFRF) is dedicated to preparing the next generation of nurses to deliver compassionate, specialized care to children and families with complex medical needs.

Through scholarships, campus seminars, and hands-on simulation programs, we provide nursing students with the skills and experience to truly make a difference.

Thanks to our expanded partnerships with Nova Southeastern University, Florida International University, and Florida Atlantic University, we’ve awarded over 80 scholarships — and counting!

"On behalf of our students and faculty, we extend our heartfelt thanks for today’s powerful presentation. Hearing parents share their personal stories was incredibly moving and gave our students invaluable insight into the human side of these conditions. Your panel truly highlighted the vital role nurses play in supporting patients and families through such challenging journeys. The impact of your words will stay with our students as they enter the profession with greater empathy and understanding."

Ivette Hidalgo, PhD, APRN, PPCNP-BC

Clinical Associate Professor & Lead Faculty for Pediatrics

FIU, Nicole Wertheim College of Nursing & Health Sciences

Together, we’re building a stronger, more skilled healthcare workforce to better serve children and families in our community.