Coming Soon…
2026 Brain Health Hustle 5K Walk/ Run
Sunday, January 11, 2026 at 7:30am
WHAT’S NEW
Learn about all the new studies, events, and outreach programs we do to help support you!
GET EDUCATED!
We strive to fund better education & research of Children’s Genetic Diseases of the Brain
MFRF has provided leadership and raised approximately $2.8 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
|| OUR MISSION ||
The Mathew Forbes Romer Foundation’s
Mission is 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.
|| LEARN MORE ||
DID YOU KNOW?
The condition is recessive.
Both parents must carry the gene to have a Tay-Sach’s Child.
High quality genetic counseling & testing
for many genetic diseases are available and critical for both potential parents.
Tay-Sachs is 1 in 40 related fatal genetic diseases
Where waste products destroy cell function
High risk groups for Tay-Sachs Disease ( occurrence of gene ) include:
Ashkenazi / Eastern European Jewish ( 1 in 27 ) | Irish American ( 1 in 50-91) | French Canadian ( 1 in 30 ) | Cajun ( 1 in 30 )
The occurrence of the Tay-Sachs gene in the rest of the population is
1 in 250, NOT ZERO
|| 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, … Read More → 
Nicholas
Nicholas was unable to produce critical … Read More → 
Mathew
Mathew was born to Kevin and … Read More → 
Brooke
Brooke was born in 1996 with … Read More → 
William
Back in 2014, the Marquardt family, … Read More → 
Nicole
Nicole Friedland was born a long … Read More → 
Eli
Eli was deeply loved and cared … Read More → 
Cristian
Born a healthy and vibrant boy, … Read More → 
Jordan
On September 17, 2019, after years … Read More → 
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.