PLATINUM2024

HELPING HANDS FOR GAND INC

Huntsville, AL   |  www.GATAD2B.org

Mission

Helping Hands for GAND is a 501(c)(3) nonprofit charity which exists 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.

Ruling year info

2015

President

Jennifer Martin

Main address

PO Box 5304

Huntsville, AL 35814 USA

Show more contact info

EIN

47-5166628

NTEE code info

Alliance/Advocacy Organizations (T01)

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Helping Hands for GAND (HHFG) is working to address the need for support, awareness, and research of the rare neurodevelopmental disorder known as GAND. HHFG is the only nonprofit organization dedicated solely to this genetic disorder. Individuals and families affected by GAND need access to community, resources, and knowledgeable professionals. They face a world that is unfamiliar with their unique struggles and a medical field which has yet to provide many answers for this condition.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

GAND Gathering & Scientific Conference

Helping Hands for GAND hosts biennial gatherings of families affected by GAND and the professionals who provide support services and research opportunities. The GAND Gathering & Scientific Conference is a 3-day event consisting of multiple conference sessions and social opportunities. These events enable families to meet fellow members of this ultra-rare community in a family-friendly, community-building event. Being members of such a rare community means that families do not have access to local support groups for GAND. For most families, the GAND Gathering may the the only opportunity they have to meet others facing the same challenges. This conference also offers families, researchers, and support professionals an unparalleled opportunity to connect with one another, which facilitates increased understanding, collaboration, and research.

Population(s) Served
People with disabilities
Families

Helping Hands for GAND introduced the 1st GAND Awareness Day in 2018, marking September 16 as a special day each year for recognizing the specific challenges faced by individuals and families affected by this ultra-rare genetic disorder. GAND Awareness Day presents a unique opportunity for the GAND community to raise awareness of GAND through posting on social media, wearing GAND apparel, sharing literature on GAND, and participating in community events.

Population(s) Served
People with disabilities
Caregivers

Helping Hands for GAND provides support for families affected by GAND through its website, social media pages, and online support groups. The GATAD2B Parent Group on Facebook allows parents of children with GATAD2B-associated neurodevelopmental disorder (GAND) to connect and share questions, concerns, experiences, resources, and encouragement. The GATAD2B Community group provides a place for extended family, friends, and interested professionals to join parents in discussions related to GAND.

Population(s) Served
Caregivers
People with disabilities

Helping Hands for GAND seeks to pursue research opportunities that may lead to increased understanding of GAND and potential treatments for this rare disorder. In addition to connecting families with researchers online and at GAND Gathering & Scientific Conferences, Helping Hands for GAND also grants funding to quality research projects affecting the GAND population.

Population(s) Served
People with disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

Families, People with disabilities

Related Program

GAND Gathering & Scientific Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2016, 45% of known GAND cases were represented at the 1st conference. HHFG offers an in-person conference biennially in even years and online conferences biennially in odd years.

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities, Caregivers, Families

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of new clients within the past 12 months

This metric is no longer tracked.
Totals By Year
Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Number indicates new cases of GAND identified in the given year

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The mission of Helping Hands for GAND (HHFG) is 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 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. This rare disorder was only first described in 2012, and by early 2022, only 225 cases had so far been identified worldwide. 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.

Helping Hands for GAND (HHFG) seeks to provide support for individuals and families affected by GAND through online information, resources, and community and through the biennial GAND Gathering & Scientific Conference, which draws families, researchers, and support professionals from around the world to a 3-day event.

HHFG seeks to raise awareness through its website and social media presence, GAND Awareness Day materials and events, networking in the medical, scientific, and rare disease communities, and literature made available to families and professionals.

HHFG seeks to pursue research and treatment opportunities by establishing a patient registry, facilitating connections between researchers and patient families, and funding some research in part or in whole when that research offers great potential to increase understanding of GAND, explore the possibility of reversibility, and/or uncover new safe and effective means of treatment.

Helping Hands for GAND has a network of passionate supporters, many of whom have a loved one affected by GAND. HHFG has already implemented many of its goals and has taken significant steps toward others. With ongoing support, HHFG will continue to make a positive impact in the GAND community.

Since launching in September 2015, Helping Hands for GAND (HHFG) has already:
• Established online support & resources
• Hosted 3 successful GAND Gathering & Scientific Conferences,1 Research Conference, & 1 Virtual Conference
• Introduced the 1st GAND Awareness Day, which is now celebrated annually
• Published brochures & informational cards concerning GAND & HHFG
• Facilitated research efforts involving a large case series study & an induced pluripotent stem cell study
• Joined Global Genes as a Foundation Alliance Member
• Recipient of the 2016 RARE Patient Impact Grant
• Represented the GAND community at the RARE Patient Advocacy Summit
• 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
• Joined the National Organization for Rare Disorders (NORD)
• Started a YouTube channel and published videos about GAND
• Awarded $100,000 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
• Recipient of the 2022 RARE Meet-Ups Impact Grant


HHFG is working toward:
• Maintaining our current online presence & programs
• Planning another online conference for 2023
• Planning the 4th GAND Gathering & Scientific Conference in 2024
• Increasing awareness through new materials & campaigns
• Publishing more literature about GAND
• Developing new outreach programs for newly diagnosed families
• Networking with more organizations and professionals
• Launching the GAND Patient Registry
• Funding a 3rd grant for GAND research projects

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

HELPING HANDS FOR GAND INC
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Operations

The people, governance practices, and partners that make the organization tick.

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

HELPING HANDS FOR GAND INC

Board of directors
as of 01/24/2024
SOURCE: Self-reported by organization
Board chair

Jennifer Martin

Tammy Ruh

Kristen McConnell

Adam Bresser

Rachel Trager

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No