Our Mission

Help Accomplish Our Mission

  • Coordinate and collaborate with the global scientific community to understand the function of the MED13L gene in order to develop effective treatments and a cure for MED13L syndrome
  • Increase medical community and public awareness of the complexity and potential severity of MED13L syndrome
  • Provide educational and emotional support for those affected by MED13L syndrome
  • Raise money to fund our goals
Donate to Cure MED13L

Putting MED13L ON THE MAP

As the parent of a child with a MED13L mutation, we ask that you please put yourself and your child “on the map” by reaching out and letting us know you exist (even anonymously, if you prefer). You can submit their story or show us where you are on the map to connect to those that may be nearby.

Dylan and Logan, NJ

TJ, DE

Brooklyn, AL

Maiya, NE

Ethan, TX

Taylor, KY

William, IL

Joey, TX

Luka - Friendswood, TX

Paris, MS

Max, OH

Molly & Julia, AZ

Laura, CA

Stephanie, TX

Leticia, Iowa
Jordan, UT
Madelynn, CA
Case, Wisconsin

Lindsay, Louisiana

Evan, TX

Owen, Wisconsin

Melissa, OH

Angel, CA

Liza, TX

Shauna, Wisconsin

Shannon, Missouri
Annalise, VA

Bowen | Dallas, TX

Joe, MD

Manori, PA

Ruth, VA
Nancy, Wisconsin
Dylan | Atascadero, CA

CJ, PA

Dan, NJ

Pietro, Kansas

Ruth | Washington DC, Maryland

Hammad Family, Mesquite, TX
Kate | Saugerties, NY
Theand & Brett | Wilmington, DE
Rachel | Gainseville, FL

CJ, PA

Donovan, Kansas

Prestenbach Family | Lake Charles, Louisiana
Brandi - Jasper, IN
Alexa Armenta-Gomez - Kearny, AZ
Joanna Salinas | Del Rio, TX
JoAnna Johnson | McDonough, GA
Sarah Saldana | Beaumont, TX
Raven Huggins | Brookhaven, GA
Ellie Rose Deprez | Richmond, KY

The Williams Family | Houma, Louisiana

Makayla Stillwagon | Cuyahoga Falls, Ohio

Adeline | Saugerties, NY

Bryson | Harrisburg, PA

Maya | Miami, FL

Rocco Richmond | Fort Worth, Texas
Rush | Washington DC
Patricia Reed | Orlando, FLA
Erica Mendez-Alcaraz | Grand Rapids, Michigan
Stephanie Greer | Killeen, Texas
Bernadette & Mateo | Kentwood, Michigan
Janet | Skokie, Illinois
Abigail Carriveau | Macomg, MI
Ayslin | Mcgregor, Texas
Sebastian | Kennewick, Washington
Cale | Irvine, CA
Joey | Monroe, NY
Wright | Virginia
Ilan | Calabasas, California
Katie Barry Boychuck | Chicago, IL
Braelyn | Crawfordsville, IN

Collin Boychuck | Park ridge, Il

Wyatt | Deltaville, VA
Maisy | Valparaiso, IN
Theand | Wilmington, DE

Ashley | Burlington, NJ

Tiffany Wines | Hamlin, VA
Elias | St. Louis, Missouri
Elisa Grana Fracalossi | Durham, NC

Ana | Chippewa, WI

Maggie D. | Severna Park, Maryland

DeBoy | Severna Park, Maryland

Sabrina Bagley | Chanute, Kansas

Amayah Houghton | Chanute, Kansas

Amy Kesler | Rochester Hill, MI

Amy Kesler | Rochester Hill, MI

Trinity Stewart | Deltona, FLA

Amir | Fort Worth, TX

Anna Smelkova | Arlington, Massachusetts

Vera Harrison | Logan, UT
Lizbeth Herrera | Hollister, CA
Shorey | Castle Rock, CO

Outside of the USA (larger map coming soon):

  • Amanda, UK
  • Ayeshia, UK
  • James, Australia
  • Bryan, UK
  • Cara, Canada
  • Susana, Portugal
  • Faten, Abu Dhabi/UAE
  • Baitar, Romania
  • Giurescu, Romania
  • Paul, España
  • Pietro, Italia
  • Adriana Maria - Camaragibe, Pernambuco
  • Panić Petar - 51000 Rijeka, Croatia
  • Felix | Arroyomolinos, Madrid
  • Andreas | Tallinn, Estonia
  • Camila | Buenos Aires, Argentina
  • Milena | Katowice, Poland
  • Lenka Cigankova | Bohusov, Czech republic
  • Liam | Brighton, UK
  • Myla-Rose | Plymouth, UK
  • Ethan | London, Ontario, Canada
  • Toov | Jerusalem, Israel
  • Adi liber | Tel aviv, Israel
  • Luca | Bologna, Italia
  • Benjamin | Northumberland, UK
  • Charlie | Northumberland, UK
  • Eden | Be'er Sheva, Israel
  • Ankur Bhatia | Toronto, Canada
  • Kathrin Düker | Munich, Germany Bavaria
  • Mirko Vianello | San Teodoro, Italy
  • Federica Iacullo | Napoli State, Italy
  • Nadia | Bolzano, Italy
  • Stéphanie Lecointre | Laval, France
  • Jordan | Rotterdam, Nederland
  • Panić Petar | Rijeka, Croatia, Europa
  • Jaimee-Lynne | Springwater, Ontario
  • Lilli | Denmark, Europa
  • Soon Wen Jin | Kuala Lumpur, Malaysia
  • Tash Karst | Canterbury, New Zealand
  • Claudia | Santiago, Chile
  • Matteo Ethier | Ontario, Canada
  • Michelle Scott | Dunbar, East Lothian, UK
  • Will | China
  • Tamara| Hungary
  • Rafaella Padilla | Linares, Maule
  • Bruno Marques | Marinha Grande, Leiria, Portugal

Spreading awareness is one of THE MOST IMPORTANT THINGS YOU CAN DO FOR YOUR CHILD, and it is the only way we will ever be able to advocate for new MED13L treatments and therapies.

Add Your Story
Add to Map
shirt
phillies

Find a Cure!

Did you or your child just receive a new diagnosis of MED13L? If so, please know you are not alone!

Contact Us