HOST A FUNDRAISER
Fundraising for our nonprofit, YWHAG Research Foundation, helps us move research forward while bringing vital resources to families navigating life with a rare genetic condition. Whether you’re honoring a loved one, marking a special occasion, or simply want to make a difference— your efforts can create ripples of impact for our entire community.
Why Fundraise for YWHAG?
YWHAG-related neurodevelopmental disorders are incredibly rare.
As of now, we've identified approximately 50 individuals worldwide who have been diagnosed with YWHAG-related disorders.
This means research is limited, and so are resources for affected families.
When you raise funds for YWHAG, you help:
-
Accelerate vital scientific research
-
support our growing family and caregiver network
-
Expand outreach to clinicians and researchers worldwide
-
Amplify communication pathways to offer families tools, answers and a sense of collective wellbeing,
Your fundraiser closes the gap between what families need and what currently exists.
WAYS TO FUNDRAISE
You don’t need to be a professional event planner to make an impact! There’s no one-size-fits-all approach— just choose what works for you. Here are a few ideas to get you started…
CELEBRATE WITH PURPOSE
Dedicate your birthday, anniversary, or special milestone to the YWHAG Research Foundation by asking for donations in lieu of gifts.
MOVE FOR YWHAG
Host a walk, run, hike, or bike ride in honor of a loved one. Invite friends, family, and colleagues to sponsor your effort.
GET CREATIVE
From bake sales and art shows to trivia nights and classroom projects— bring your community together and raise awareness in the process.
LAUNCH A DIGITAL CAMPAIGN
Utilize Facebook, Instagram, GoFundMe, or your own networks to tell your story and raise funds online.
YWHAG WIP (WORK IN PROGRESS):
OUR ACTIVE PROJECTS THAT YOUR FUNDRAISER WILL SUPPORT
Czech Centre for Phenogenomics
Institute of Molecular Genetics of the Czech Academy of Sciences
-
Characterizing and Phenotyping of disease models
Hugh Kaul Precision Medicine Institute
University of Alabama at Birmingham
-
Studying IPSCs and conducting drug screening to accelerate a therapeutic approach to target the disease and rapidly transition to a clinical setting.
Rare-X
-
Data collection platform hosting an international patient registry.
Transcripta Bio (previously Rarebase)
-
Drug repurposing project supporting therapeutic strategy development.
The Jackson Laboratory (JAX)
-
YWHAG variant project and disease models.
Simons Searchlight
-
Host of the YWHAG Biorepository contributing to advancing research and cross-disorder data harmonization.
YWHAG Research Foundation Scientific Advisory Board
-
A partnering international network of researchers and clinicians
