Our Mission
To support individuals and families affected by GATAD2B-associated neurodevelopmental disorder (GAND), to increase awareness, and to work toward research and treatment opportunities to enrich the lives of those with this rare genetic condition.
HHFG desires to help GAND families better understand this disorder and connect with other GAND families online, in their local areas when able, and at the biennial GAND Gathering & Scientific Conference.
HHFG aims to raise awareness of GAND among the general population as well as medical and support professionals. Most doctors, therapists, and teachers have never seen a case of GAND and have not likely even heard of it.
HHFG seeks to increase research and treatment opportunities for the GAND community through establishing a patient registry and by facilitating and potentially funding worthwhile studies.
HHFG desires to help GAND families better understand this disorder and connect with other GAND families online, in their local areas when able, and at the biennial GAND Gathering & Scientific Conference.
HHFG aims to raise awareness of GAND among the general population as well as medical and support professionals. Most doctors, therapists, and teachers have never seen a case of GAND and have not likely even heard of it.
HHFG seeks to increase research and treatment opportunities for the GAND community through establishing a patient registry and by facilitating and potentially funding worthwhile studies.
The Helping Hands for GAND Mission in Action
Since launching in September 2015, Helping Hands for GAND has already:
- Established a website, social media presence, and online support groups
- Hosted 3 successful GAND Gathering & Scientific Conferences, 1 Research Mini-Conference, & 2 Virtual Conferences
- Introduced the first GAND Awareness Day, now observed annually
- Published brochures and informational cards concerning GAND and HHFG
- Facilitated research efforts involving a large case series study and an induced pluripotent stem cell study
- Joined Global Genes as a Foundation Alliance Member
- Received the 2016 RARE Patient Impact Grant
- Represented the GAND community at the RARE Patient Advocacy Summit since 2016
- Networked with several patient advocacy organizations to research best practices and to learn about more opportunities and resources for the GAND community
- Expanded our Board of Directors to better serve the GAND community
- Established a Scientific Advisory Committee
- Started a YouTube channel and published videos about GAND
- Joined the National Organization for Rare Disorders (NORD)
- Awarded $150,000 in research grants to support current studies of GAND in human cellular and mouse models. The collaborative project seeks to confirm the phenotype of GAND, to explore the prospect of reversibility, and to develop methods of screening potential therapeutic compounds.
- Begun development of the GAND Patient Registry
- Implemented a series of virtual "GAND Chats" for newly diagnosed families
Helping Hands for GAND is currently working toward:
- Maintaining our current online presence and programs
- Planning the 4th GAND Gathering & Scientific Conference in July 2024
- Increasing awareness through new materials and campaigns
- Publishing more literature about GAND
- Developing outreach programs for newly diagnosed families
- Networking with more organizations and professionals
- Launching the GAND Patient Registry
- Staying up-to-date on GAND research efforts and evaluating how we might continue to financially support those studies
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