Patient Advocacy Board

GAY GROSSMAN

ADCY5.org

SANDRA SERMONE

ADNP Kids Research Foundation

KATHLEEN O’SULLIVAN-FORTIN

ALD Connect

AMANDA MOORE

Angelman Syndrome Foundation

LAURA BADMAEV

ARRE

HEIDI WALLIS

Association for Creatine Deficiencies

LISA MANASTER

CACNA1A Foundation

Krystyn LaBate, Ph.D.

CACNA1H Alliance

KRISTINA HONE, MBA, TRS

CASK Gene Foundation

JEFF D’ANGELO

CHAMP1 Foundation

BRIAN BROADBENT

Coalition to Cure CHD2

LAINEY MOSELEY

CHOPS Syndrome

JENNIFER SILLS

CSNK2A1 Foundation

DENISE SCOTT

CSNK2B Foundation

EMILY AMERSON

CTNNB1 Connect and Cure

MONICA ELNEKAVEH

Cure GABA-A Variants

JUSTIN LEBLANC

Cure GABRB2

CHRISTINE WAGGONER

Cure GM1 Foundation

MICHAELLE JINNETTE

KCNH1 Foundation

KASEY WOLEBON

Cure Mito

ALLISON PECK

Cure VCP Disease

KEITH MCARTHUR

CureGRIN Foundation, CEO & Head of Science

GERALDINE BLISS

CureSHANK

PAYAL PATEL

DLG4 Research Fund

JACKIE VANDERHOOF

DUP15Q Alliance

SARAH GLASS

DYRK1A

JILL HAWKINS

FAM177A1 Research Fund (FAM177A1)

LEAH SCHUST MYERS

FamilieSCN2A Foundation

LAUREN HOFFER

Foundation for Angelman Syndrome Therapeutics (FAST)

BO BIGELOW

Foundation for Hao-Fountain Syndrome

LISA BURNETT

Foundation for Prader-Willi Research

NASHA FITTER

FOXG1 Research Foundation

MICHAEL TRANFAGLIA, MD

FRAXA Research Foundation

MELISSA GAMBLE

Global Foundation for Peroxisomal Disorders

GLENNA STEELE

Glut1 Deficiency Foundation

LIZ MARFIA-ASH

GRIN2B Foundation

ALLISON MOORE

Hereditary Neuropathy Foundation

MADDIE GILLENTINE

HNRNP Family Foundation

JACQUELINE SKINNER-FOSTER

Hope For Harvey-DLG4

GEOFF RHYNE

IDefine

SANAM KADKHODA

iDREAM For a Cure

GABI CONECKER

International SCN8A Alliance

CLARA TANG

Kabuki Syndrome Foundation

STEPHANIE TELESCA

KCNC1 Foundation

SCOTTY SIMS

KCNQ2

JUSTIN WEST

KCNT1 Foundation

ASHLEY POINT

KDVS

ANGIE FULLER

KIF1A.org

DR. CHRISTAL DELAGRAMMATIKAS

Malan Syndrome Foundation

NICK SEAVER

MED13L Foundation

KATE WEARS

Myhre Syndrome Foundation

CARLIE MONNIER

NR2F1 Foundation

GHOLSON LYON

Ogden C.A.R.E.S.

MICHELLE LARSCHEID

P.R.I.S.M.S. (Parents and Researchers Interested in Smith-Magenis Syndrome)

TARUNA REDDY

PACS1 Foundation (PACS1)

ANDREW LONGENECKER

PBD Project

JULIE WALTERS

PCDH19 Alliance

THERESA PAUCA

Pitt Hopkins Research Foundation

BINA SHAH

Project 8p Foundation

DR. KIM STEPHENS

Project Alive

TERI DECLERCQ

The Rory Belle Foundation

ALLISON KACZENSKI

SATB2 Gene Foundation

MIRANDA COX

Scarlett’s GABRA1 Village

NUALA SUMMERFIELD

Schinzel-Giedion Syndrome Foundation

ESZTER HARS, PH.D

Shwachman Diamond Syndrome Alliance

JASON CURRY

SCN2A Foundation

HALEY OYLER

SETBP1 Society

POLLY APPEL

SHANK2

MARIE-FRANCE GERVAIS

Shine Foundation – DLG4

AMBER FREED

SLC6A1 Connect

TARA ZIER

Stiff Person Syndrome Research Foundation

CHARLENE SON RIGBY

STXBP1 Foundation

MIKE GRAGLIA

SynGAP Research Fund

JILL KIERNAN

Tatton Brown Rahman Syndrome Foundation

KIM NYE

Tess Foundation (SLC13A5)

STEVE ROBERDS

TSC (Tuberous Sclerosis Complex) Alliance

REBEKAH HALL

UGDH Foundation

STEPHEN PRATT

WWOX Foundation

TRISH FLANAGAN

Yellow Brick Road Project

ANGELA PAPAZOGLOU

Yellow for Yiannis

Advisory Boards