SAVE THE DATE:

April 27, 2022 , 7:00 p.m.
for the 24th Anniversary Sweetness and Laughter Gala

Featuring:  BOB COSTAS: 29 Emmy Award Winner

See the Light Awards with unprecedented Virtual Entertainment and Celebrations...

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, ...
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Nicholas

Nicholas was unable to produce critical ...
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Mathew

Mathew was born to Kevin and ...
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Brooke

Brooke was born in 1996 with ...
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William

Back in 2014, the Marquardt family, ...
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Nicole

Nicole Friedland was born a long ...
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Eli

Eli was deeply loved and cared ...
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Cristian

Born a healthy and vibrant boy, ...
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Jordan

On September 17, 2019, after years ...
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Kevin Michael

Kevin Michael Vargas, born to Daniel ...
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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.

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