To see and read the growing list of scientific papers on SYNGAP1, go to cureSYNGAP1.org/Papers.
(411 total, including 60 in 2025 and 49 so far in 2026)
Below is a summary of mostly personal stories shared in various media outlets from CURE SYNGAP1 families living with SYNGAP1-Related Disorders. Tell your story – see our guidelines to help get you started!
July 29, 2026
Line of Departure/The Pulse of Army Medicine
Genetic Diseases in Children of U.S. Military Service Members
June 7, 2026
Kapable
Phoebe’s Fight – How SYNGAP1 Affects the Life of a Child
May 25, 2026
Remarkable Futures Podcast
Rare Disease Changed Us
March 20, 2026
Williamsburg-Yorktown Daily
Sprint for SYNGAP1 5K to Raise Awareness, Support Research in Williamsburg
February 25, 2026
Univision
SYNGAP1, el diagnóstico que cambió la vida de Rosie en Texas
February 9, 2026
Gene Dx
Diagnosis Diaries – Sara Driscoll
January 30, 2026
CT (Connecticut) Mirror
Opinion: Why my daughter’s rare genetic disorder is CT’s moral imperative
January 23, 2026
KGUN-ABC Tucson
ASDB parents fight school relocation that will displace students with disabilities
January 8, 2026
CNBC and CNBC Cures
CNBC’s Becky Quick details daughter’s rare disease journey
More coverage is linked on cureSYNGAP1.org/Kaylie
November 24, 2025
The Everymom
How Genetic Testing Helped One Mom Turn a Gut Feeling into a Diagnosis for Her Child
November 7, 2025
Nemours Children’s Hospital
Epilepsy Awareness Month: Isaac’s Story
September 5, 2025
WSPA 7 News – Your Carolina
4th Annual Scramble for SynGAP
May 21, 2025
Stanford Medicine Magazine
Shrinking budgets could impact medical research
January 23, 2025
Stanford Medicine Magazine
Practice doesn’t always make perfect
September 18, 2024
Más Que Raras Podcast
Desde Venezuela a Texas: Hablando de SYNGAP1 con Merlina Dávila
September 5, 2024
Simons Searchlight
Leading the Way: An Interview with Aaron Harding
September 5, 2024
WSPA 7News
3rd Annual Scramble for SynGAP
August 6, 2024
Global Genes
Jansen’s Journey – A RAREly Told Stories film
August 1, 2024
The Land
Car raffle aims to raise funds and awareness for Syngap1
May 20, 2024
DeafBlind Potter Podcast
Monica Harding’s Inspiring Journey: Overcoming Syngap Challenges with Her Family
April 30, 2024
Telemundo, Colorado
Merlina Dávila y Familia – Entrevista para Telemundo
April 8, 2024
Caregiver Action Network
Mi experiencia como hermana y cuidadora de gemelas que viven con una enfermedad del neurodesarrollo
April 8, 2024
Caregiver Action Network
My Sibling Experience as a Caregiver of Twin Sisters Living with a Neurodevelopmental Disease
April 3, 2024
Georgia Public Broadcasting
80% of rare diseases are genetic. That’s why whole genome sequencing can help with diagnoses
March 4, 2024
Best Self Atlanta
Jansen Jones: Healing Through Horses
February 29, 2024
Children’s Healthcare of Atlanta
Celebrating Amir and Jansen: Rare Kids Receive Specialized Care at Children’s
February 26, 2024
DeafBlind Potter Podcast
“Navigating Life’s Challenges: A Journey with SynGAP – An Interview with Aaron Harding”
February 23, 2024
Q City Metro
Black family’s struggle to get diagnosis for son highlights healthcare disparities
February 12, 2024
El País
Unraveling the mystery of Celia’s inexplicable disease
December 24, 2023
Rare Parenting Magazine
Early Signs of a Neurological Disorder
December 20, 2023
Atlanta News First
Georgia parents raising awareness for their daughter’s rare genetic disorder
October 17, 2023
Fox 5 – San Diego
Supporting SynGAP Research Fund – Cannonball for the Cure
September 15, 2023
The Lifegiver Podcast
Marriage & Parenting Through Medical & Neurodiverse Challenges (EFMP)
August 30, 2023
Child Life on Call
J.R.’s Story- A son with a Rare Diseasee Challenges (EFMP)
July 27, 2023
WPLN 90.3 News
The cost of care for disabilities and chronic illnessesallenges (EFMP)
July 14, 2023
TN Dept. of Intellectual & Developmental Disabilities
TN START Program: Jadyne and Jackie
July 13, 2023
Brain & Life Magazine
Part Two: Community Stories of Navigating a Rare Epilepsy Diagnosis
July 13, 2023
Brain & Life Magazine
Segunda parte: Perspectivas de la comunidad sobre cómo afrontar un diagnóstico de una epilepsia genética
July 6, 2023
Brain & Life Magazine
Part One: Community Stories of Navigating a Rare Epilepsy Diagnosis
July 6, 2023
Brain & Life Magazine
Primera parte: Perspectivas de la comunidad sobre cómo afrontar un diagnóstico de una epilepsia genética
July 1, 2023
Televisión Pública Noticias
Cómo es vivir con una enfermedad que sólo tienen 1.250 personas en el mundo
June 26, 2023
Nordonia Hills News
An Attempt at Normalcy – SYNGAP1 Awareness Day
June 21, 2023
11 Alive – Atlanta
Young girl diagnosed with rare genetic disorder, family works to raise awareness
June 9, 2023
Axios – Salt Lake City
Utah researchers fast-track medical discovery — with fruit flies
May 1, 2023
WCVB-5 ABC Boston
Massachusetts girl with rare disorder inspires her family to raise thousands for research
April 17, 2023
Patient Worthy
NC Family Raises SYNGAP1 Awareness After Daughter’s Diagnosis
April 11, 2023
Brain & Life
How Parents Advocate for Their Children with Rare Diseases
April 5, 2023
CBS News – Sacramento
Manteca family finds new hope as twin daughters live with rare genetic disorder
April 4, 2023
The Kansas City Star
Only 1,215 people have this rare disease. It changed one Johnson County family’s life
April 3, 2023
The Oxford Eagle
Nathan’s dog
March 22, 2023
News & Tribune – Indiana
Floyd family seeks to lessen funding gap for rare genetic disorder
March 13, 2023
KMBC News – Kansas City
“We’re so hopeful’: Local girl fighting rare disease
February 28, 2023
Fox4KC News
Kansas City-area family helping spread awareness after daughter’s rare disease
February 28, 2023
WNCT9 News
Newport girl is one of 1,100 people in world battling specific genetic disease
February 28, 2023
WITN.com
Five-year-old Carteret County girl battles rare diseasecific genetic disease
February 12, 2023
Nashville Medical News
Why I’m Working to Change ER Protocols to Emphasize Empathy and Respect
January 25, 2023
Newsweek
Our Son Has a Rare Genetic Disorder, Life Is Risky for Us
January 16, 2023
Invitae – Health Decoded
Finding Andrew’s truth: A family’s unexpected rare disease diagnosis
January 2, 2023
Autism Spectrum News
Is It Genetic? My 40-Year Journey of Misdiagnoses for My Son
January 2, 2023
WKRN News
Tennessee program works to create better protocols for behavioral, mental health needs
December 27, 2022
News Channel 5 – Nashville
After daughter’s rare diagnosis, mom works to improve hospital responses
December 23, 2022
Inside Precision Medicine
Rare Parents Tackling Rare Diseases
December 9, 2022
Fox 17 – WZTV Nashville
Rare genetic disorder case inspires new ER protocol, emphasizing empathy and respect
November 30, 2022
Inside Precision Medicine
Genomenon Inks AI/Genomics Deal with Three Rare Neuro-Disease Organizations
November 1, 2022
WLS 890 AM – Chicago
3 dads raised $156 thousand dollars in 57 hours for their kids’ rare genetic disease
October 31, 2022
The Dallas Morning News
McKinney dad’s cross-country trek raised more than $150K for research of son’s disease
October 21, 2022
Fox News
From NY to LA: Dads drive across the country to expand awareness for their kids’ rare disease
October 21, 2022
CBS News – New York
Dads take “dares for donations” on cross-country trip raising money for SYNGAP1 research
October 19, 2022
KDKA CBS News – Pittsburgh
Something Good: Helping Emmitt
October 3, 2022
Donegal Live
Lifford man Shane McCauley swims English Channel in under 12 hours
September 30, 2022
WSPA 7News
1st Annual Scramble for SynGAP
September 13, 2022
Wyoming Tribune Eagle
Cheyenne mom mountain bikes to raise awareness of son’s genetic disorder
July 14, 2022
Tennessee DIDD Start Program
TN START Program: Jadyne and Jackie
June 2, 2022
Love What Matters
Mom shares 16-year journey to son’s rare SYNGAP1 diagnosis
May 12, 2022
TN Dept. of Intellectual & Developmental Disabilities
TN START Assessment & Stabilization Teams
April 2, 2022
Queensland Country Life
Campdraft for a Cure to SynGAP1
March 21, 2022
The Camphill School Newsletter – Reflections
A Diagnosis
March 3, 2022
Rare Disease UK
Our SYNGAP1 story – Our Kimberley
February 28, 2022
Cook Children’s Checkup Newsroom
Rare Disease Day: Meet 4-year-old Carter, One of Many Patients Treated at Cook Children’s for a Rare Disease
February 25, 2022
Variantyx
A Rare Disease Day Interview of One Family’s Journey
January 11, 2022
National Council on Severe Autism
Autism and the Crisis in Crisis Care
December 9, 2021
Business Wire
Young Patient with Rare Conditions Experiences the Benefits of Medical Cannabis
October 1, 2021
Dallas Doing Good
Cannonball for the SynGAP1 Cure
September 28, 2021
Invitae – Health Decoded
Naya’s story: Now we can move forward
September 27, 2021
Hotty Toddy
Oxford Father Joins Road Trip to Bring Awareness, Raise Funds for Rare Genetic Disorder Research
September 20, 2021
The Dallas Morning News
McKinney dad doing Cannonball Run cross-country drive to raise awareness of son’s rare disease
September 9, 2021
The Almanac
Upper St. Clair resident plans to livestream cross-country ride for charity
August 23, 2021
pdsoros.org
Mike Graglia on Founding the SynGAP Research Fund
July 28, 2021
The SandPaper
Genetic Testing Solves a Family’s Medical Mystery
December 17, 2020
Global Genes
Rare Leader: Mike Graglia, Managing Director, Syngap Research Fund
October 27, 2020
Disorder Rare Disease Films
Foundations of Rare – SYNGAP1
August 24, 2020
The Examiner News
Boy’s Lemonade Stand Raises Research Funds for Brother’s Rare Disorder
July 5, 2020
Jönköping-Posten
Familjen cyklar runt Vättern – för Caspians, 3, ovanliga diagnos: ”Bara sju i Sverige har diagnosen”
January 1, 2020
The Sulston Project
The Graglia Family – SynGAP
October 2, 2019
Boston Children’s Hospital
Talking about a child with special needs: Tips from a mom