Donate Registry

SRF in the Press

May 22, 2023

Nathan Frye has a rare disease. This is how his family has supported research and promoted integration into neurotypical education

ABC-24 Memphis

May 8, 2023

'Eye of the fly': How fruit flies could help find treatment for a rare genetic disease

KSL.com

May 1, 2023

Massachusetts girl with rare disorder inspires her family to raise thousands for research

WCVB-5 ABC Boston

April 17, 2023

NC Family Raises SYNGAP1 Awareness After Daughter’s Diagnosis

Patient Worthy

April 11, 2023

How Parents Advocate for Their Children with Rare Diseases

National AAN Magazine

April 5, 2023

Manteca family finds new hope as twin daughters live with rare genetic disorder

CBS - Sacramento

April 4, 2023

Only 1,215 people have this rare disease. It changed one Johnson County family’s life

The Kansas City Star

April 3, 2023

The Oxford Eagle - Mississippi

March 22, 2023

Floyd family seeks to lessen funding gap for rare genetic disorder

News & Tribune - Indiana

March 13, 2023

"We're so hopeful': Local girl fighting rare disease

KMBC News - Kansas City

February 28, 2023

Kansas City-area family helping spread awareness after daughter’s rare disease

Fox4KC News

February 28, 2023

Newport girl is one of 1,100 people in world battling specific genetic disease

WNCT9 News

February 28, 2023

Five-year-old Carteret County girl battles rare disease

WITN.com

February 12, 2023

Why I’m Working to Change ER Protocols to Emphasize Empathy and Respect

Nashville Medical News

January 25, 2023

Our Son Has a Rare Genetic Disorder, Life Is Risky for Us

Newsweek

January 16, 2023

Finding Andrew’s truth: A family’s unexpected rare disease diagnosis

Invitae - Health Decoded

January 2, 2023

Is It Genetic? My 40-Year Journey of Misdiagnoses for My Son

Autism Spectrum News

January 2, 2023

Tennessee program works to create better protocols for behavioral, mental health needs

WKRN News

December 27, 2022

After daughter's rare diagnosis, mom works to improve hospital responses

News Channel 5 - Nashville

December 23, 2022

Rare Parents Tackling Rare Diseases

Inside Precision Medicine

December 9, 2022

Rare genetic disorder case inspires new ER protocol, emphasizing empathy and respect

Fox 17 - WZTV Nashville

November 30, 2022

Genomenon Inks AI/Genomics Deal with Three Rare Neuro-Disease Organizations

Inside Precision Medicine

November 1, 2022

3 dads raised $156 thousand dollars in 57 hours for their kids’ rare genetic disease

WLS 890 AM - Chicago

October 31, 2022

McKinney dad’s cross-country trek raised more than $150K for research of son’s disease

The Dallas Morning News

October 29, 2022

These dads drove over 57 hours, livestreamed the cross-country trip on YouTube and raised $156,000 for their kids’ rare genetic disease

CNBC

October 21, 2022

From NY to LA: Dads drive across the country to expand awareness for their kids' rare disease

Fox News

October 21, 2022

Electric Cannonball Run: Dads Drive A Tesla Model Y Cross-Country To Fight Illness Affecting Their Sons

Forbes

October 21, 2022

Dads take "dares for donations" on cross-country trip raising money for SYNGAP1 research

CBS News - New York

October 21, 2022

Local Attorney Driving Across County Live on Stream to Raise Awareness, Raise Funds for Rare Genetic Disorder Research

Hotty Toddy

October 19, 2022

Something Good: Helping Emmitt

KDKA CBS News - Pittsburgh

September 30, 2022

1st Annual Scramble for SynGAP

WSPA 7News

July 14, 2022

TN START Program: Jadyne and Jackie

Tennessee DIDD Start Program

June 13, 2022

My daughter has a rare seizure-inducing condition. She wasn't diagnosed until insurance agreed to pay for genetic testing.

Insider

June 2, 2022

Mom shares 16-year journey to son’s rare SYNGAP1 diagnosis

Love What Matters

April 2, 2022

Campdraft for a Cure to SynGAP1

Queensland Country Life

March 3, 2022

Our SYNGAP1 story - Our Kimberley

Rare Disease UK

February 28, 2022

Rare Disease Day: Meet 4-year-old Carter, One of Many Patients Treated at Cook Children's for a Rare Disease

Cook Children's Checkup Newsroom

February 25, 2022

A Rare Disease Day Interview of One Family’s Journey

Variantyx

January 11, 2022

Autism and the Crisis in Crisis Care

National Council on Severe Autism

December 9, 2021

Young Patient with Rare Conditions Experiences the Benefits of Medical Cannabis

Business Wire

October 1, 2021

Cannonball for the SynGAP1 Cure

Dallas Doing Good

September 28, 2021

Naya’s story: Now we can move forward

Invitae - Health Decoded

September 27, 2021

Oxford Father Joins Road Trip to Bring Awareness, Raise Funds for Rare Genetic Disorder Research

Hotty Toddy

September 20, 2021

McKinney dad doing Cannonball Run cross-country drive to raise awareness of son’s rare disease

The Dallas Morning News

September 9, 2021

Upper St. Clair resident plans to livestream cross-country ride for charity

The Almanac

August 23, 2021

Mike Graglia on Founding the SynGAP Research Fund

pdsoros.org

July 28, 2021

Genetic Testing Solves a Family’s Medical Mystery

The SandPaper

May 3, 2021

SynGAP Research Fund and illumina Present "Celebrating Caren," the Incredible Story of the Oldest Known SYNGAP1 Patient in the United States

PR Newswire

December 17, 2020

Rare Leader: Mike Graglia, Managing Director, Syngap Research Fund

Global Genes

October 27, 2020

Foundations of Rare - SYNGAP1

Disorder Rare Disease Films

August 24, 2020

Boy’s Lemonade Stand Raises Research Funds for Brother’s Rare Disorder

The Examiner News

July 5, 2020

Familjen cyklar runt Vättern – för Caspians, 3, ovanliga diagnos: ”Bara sju i Sverige har diagnosen”

Jönköping-Posten

January 1, 2020

The Graglia Family - SynGAP

The Sulston Project

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