Philanthropy, Voluntarism, and Grantmaking

HELPING HANDS FOR GAND INC

Oviedo, FL

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

2015

President

Jennifer Martin

Main Address

PO Box 623006

Oviedo, FL 32762 USA

Keywords

advocacy, support, rare, research

EIN

47-5166628

 Number

1918455742

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (T01)

Specifically Named Diseases (G80)

IRS Filing Requirement

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

Social Media

Programs + Results

What we aim to solve New!

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

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

SOURCE: Self-reported by organization

GAND Gathering & Scientific Conference

GAND Awareness Day

Online Support for GAND

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of conference attendees

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

GAND Gathering & Scientific Conference

Context notes

In 2016, 19 of the 42 known cases of GAND (45%) were represented at the conference. In 2018, 31 of the 93 known cases of GAND (33%) were represented at the conference.

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

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 ultra-rare disorder was only first described in 2012, and by early 2018, only 85 cases had so far been identified. 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.

Helping Hands for GAND sees the positive impact its programs have in the GAND community through public and private messages from families and supporters, survey responses, strong attendance at the biennial GAND Gathering & Scientific Conference, active participation and continued interest and in programs, and successful collaboration with researchers.

Since launching in September 2015, Helping Hands for GAND (HHFG) has already: • Established online support & resources • Hosted 2 successful GAND Gathering & Scientific Conferences • Introduced the 1st GAND Awareness Day • Published brochures & informational cards concerning GAND & HHFG • Recorded footage of families & professionals for videos soon to be published • Facilitated research efforts involving a large case series study & an induced pluripotent stem cell study • Joined Global Genes as a Foundation Alliance Member • Applied for & received the 2016 RARE Patient Impact Grant HHFG is working toward: • Maintaining our current online presence & programs • Planning the 3rd GAND Gathering & Scientific Conference in 2020 • Increasing awareness through new materials &campaigns • Joining the National Organization for Rare Disorders (NORD) • Establishing a patient registry • Funding a research grant for maintenance of mouse models of GAND • Establishing a Scientific Advisory Committee

External Reviews

Financials

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Operations

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

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

No

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

No

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

No

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

No