UPDATE AND SAVE THE DATE
Dear Friends of the Mathew Forbes Romer Foundation (MFRF),
We hope everyone is doing well although we are certainly dealing with unprecedented times. We wanted to provide you an update on the continued progress of MFRF while letting you know that Sunday, February 25, 2024 will be the next "Sweetness and Laughter" Celebration in Boca Raton, Florida starting at 11:30 a.m. See below for more details.
THE YEAR IN REVIEW
THE 25TH Anniversary Gala. :
We are excited to share with you the success of Mathew Forbes Romer Foundation’s 25th Annual Gala held on Sunday, March 5 at Broken Sound Country Club. Over 200 people attended and we raised record funds to support our mission.
Highlights of the Gala Program included:
- Our program and video were powerful tributes to the beautiful, inspiring children and families, and spanned our mission of Genetic Screening, Nursing Education, and Research of Treatments and Cures.
- Additionally, we were thrilled to recognize our many “See The Light” honorees. Past recipient Dr. Terry Flotte, of the UMass College of Medicine, provided important updates on the gene therapy clinical trials. Our newest honoree Karen Grinzaid and JScreen showcased the 10-year partnership with MFRF for Genetic Screening.
RESEARCH AND TREATMENTS:
- Our special partnership with the University of Massachusetts Chan Medical School and our partnership with National Tay-Sachs and Allied Diseases Association (NTSAD) , has made the impossible, possible! Last year we shared that the company that was licensing the Gene Therapy Technology in clinical trials, ended its investment due to financial problems. Under the leadership of Dean Terry Flotte, and great team work with the MFRF and NTSAD networks, we are executing an ambitious plan to complete the dose escalation clinical trial Phase 1/2 protocol dosing the final three children through the highest dose level.
GENETIC AND NEWBORN SCREENING:
- With the same urgency we have for developing treatments, MFRF is driving initiatives to detect at-risk families and affected children through pre-conception carrier and newborn screening (NBS) programs.
- As part of the ongoing celebration of the 10-Year partnership with JScreen we continue to fund and promote carrier screening programs across South Florida and during the annual NTSAD Family conference. JScreen recently shared our story in South Florida and in medical media including the Miami New Times, The Hollywood Times, and Medical Marketing and Media: "JScreen raises awareness about testing for Tay-Sachs disease".
- MFRF President Kevin Romer was invited to present the NTSAD Research Day Plenary Session update on the Newborn Screening Consortium that MFRF helped to create including the completion of Dried Blood Spot Testing Assays for Tay-Sachs and Canavan diseases.
NURSING EDUCATION:
- MFRF loves working with nursing students to help prepare them to care for our children's special needs! Programs include scholarships, seminars, and designing and implementing simulation programs.
- In celebration of its 25th anniversary, MFRF increased its support for scholarships with Nova Southeastern University, Florida International University, and Florida Atlantic University.
- After three years of MFRF's team of experts conducting interactive virtual seminars, we conducted our first in-person session at the NSU main campus while simulcasting to two other campuses. We invited our JScreen partners to join us with a carrier screening program for the students!
NEW LEADERSHIP:
- Established the role of “Vice President of Community Outreach” recognizing Linda Meran’s dedication and achievements over the years.
- Created a “Next Gen” Board to address succession planning and to develop our future leaders.
Save the Date for our 2024 Sweetness and Laughter Celebration!!!
ON
Sunday, February 25, 2024 starting at 11:30 a.m.
AT
The Boca Raton Marriott Boca Raton, Florida
INVITATIONS WILL BE MAILED OUT IN THE COMING MONTHS
If you have moved in the last year, please send your new mailing address to info@mfrfoundation.org
Please continue to check our website www.mfrfoundation.org for more information on sponsorships and tickets.
Linda Meran
Gala Co-Chair
Allan Spiro
Gala Co-Chair
Our sincerest thanks and love!
Lisajane & Kevin
Lisajane & Kevin Romer
Co-Founders
For up-to-date news, please visit us at MFRFoundation.org