Sweetness and Laughter
Celebration
Sunday, February 25, 2024

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 $2.5 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

Mathew_6mos

|| 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.

Scroll to Top