BRAYDEN ALEXANDER GLOBAL FOUNDATION FOR HYDRANENCEPHALY

"Believe in the Impossible!"

aka Global Hydranencephaly Foundation   |   Jemez Springs, NM   |  http://www.ghf.life

Mission

Ensuring the preservation of human rights for those who have been diagnosed with hydranencephaly, a rare neurological condition.

Ruling year info

2014

Founder & Executive Director

Mrs. Alicia N Harper

Main address

760 San Diego Loop

Jemez Springs, NM 87025 USA

Show more contact info

EIN

45-2113600

NTEE code info

Specifically Named Diseases (G80)

Fund Raising Organizations That Cross Categories includes Community Funds/Trusts and Federated Giving Programs) e.g. United Way (T70)

Public Foundations (T30)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Children with hydranencephaly are diagnosed at a rate of 1 in 100,000 births worldwide and of those children, very few of their families are given accurate information and prognosis. Global Hydranencephaly Foundation is working to shine a light on the possibilities that exist for the lives of these individuals, preserve their human rights, and work to build strong parent advocates in order for them to receive the opportunity to live the best quality of life possible. Through awareness campaigns, individualized family support projects, and advocacy efforts we have worked to bring hope to families where no help would have otherwise existed.

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?

Global Hydranencephaly Foundation Family-to-Family Resource Network

online support network specifically for those parents, immediate care-givers, and actively involved family members to lean on for support, information, and guidance in caring for, or navigating the journey involved, a child given the diagnosis we represent.

Population(s) Served
Families
Parents

This is a support network housed on Facebook which provides individualized support resources for families who have faced the loss of their child with hydranencephaly.

Population(s) Served
Adults

This group has been created and is maintained by Global Hydranencephaly Foundation for purposes of exchanging equipment and care items amongst the families we serve across the globe.

Population(s) Served
Families
Caregivers

Upon hospitalization lasting more than 1 week in duration, families will receive a care package including: blanket, puzzle books, coloring books, socks, hygiene essentials, a travel cup, informational items, and a gift certificate for their personal use as they see the need.

Population(s) Served
Families

In communities that we have a presence, we are working to build inclusive community programs through the famliies we have there: accessible play spaces, community support missions, and whatever programs our families are involved in through fiscal sponsorships.

Population(s) Served
Families

Two volunteers or like-minded organizations will be chosen each year to receive a $500 grant in support of their continued efforts in their community, or their commitment as a volunteer with GHF.

Population(s) Served
Adults

Where we work

Awards

Runner-Up Readers' Choice Favorite Special Needs Online Community 2013

About.com Readers' Choice Award

Nominated Health Activist Hero in Third Annual Wego Health Activist Awards 2013

Wego Health

Nominated Best in Show: Facebook, in Third Annual Wego Health Activist Award 2013

Wego Health

Nominated Best in Show: Online Community, in Third Annual Wego Health Activist Award 2013

Wego Health

Nominated Advocating for Another 2020

Wego Health

Nominated Advocating for Anothernated 2019

Wego Health

Nominated Best in Show: Community 2019

Wego Health

Nominated Best Team Performance 2019

Wego Health

Nominated: Adcoating for Another, Best in Show: Community, Best in Show: Facebook, Patient Leader He 2018

Wego Health

Nominated: Best in Show: Community, Best in Show: Facebook 2017

Wego Health

Nominated: Best Team Performance, Best in Show: Community or Forum 2016

Wego Health

Winner: Best in Show: Community or Forum; Nominated: Best in Show: Facebook & Best Team Performance 2015

Wego Health

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 countries represented by visitors

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

Children and youth, People with disabilities, People with diseases and illnesses, Parents

Related Program

Global Hydranencephaly Foundation Family-to-Family Resource Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of children reached with a diagnosis of hydranencephaly.

This metric is no longer tracked.
Totals By Year
Related Program

Global Hydranencephaly Foundation Family-to-Family Resource Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This number is based upon the content of our database - these families are not in constant contact with our mission, however have made contact and give their contact info at some point.

Number of Facebook followers

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

Adults

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 goals of Global Hydranencephaly Foundation include, but are not limited to, the following:

- provide individualized family support global-wide to parents, or other primary care providers, and siblings from the point of diagnosis and even after death of the individual diagnosed;
- build strong parent advocates so that these children and adults receive the medical and educational support they need to grow and thrive in their environments;
- make available accurate information to educate parents, caregivers, family, friends, and the greater medical community;
- raise awareness of the possibilities that do exist for a quality of life worth living;
- assist with obtaining goods and services needed on this journey through donations and grants as able;
- support like-minded organizations in the communities our families reside through fiscal sponsorship;
- assist with adoption/foster options for families making this their choice or babies and children needing homes with a diagnosis of hydranencephaly;
- support families as their loved one transitions to adulthood.

Our strategy for making this happen is to continue to work towards reaching as many people as we are able, especially those families upon diagnosis, in order to ensure they are supported on their journey with hydranencephaly from the beginning. At the same time, we continue to strive towards making our educational materials available to the medical community so that they're aware of the possibilities that do exist with this diagnosis beyond the outdated medical text. The foundation of our mission remains our family-to-family resource network, a private group on Facebook for primary care providers of children with hydranencephaly, where there is someone available 24/7/365 to provide guidance, support & information when needed.

Global Hydranencephaly Foundation is the only registered nonprofit organization working to provide support and advocacy services to families while also working to bring greater awareness of this particular diagnosis. We currently have a reach of over 700 families in about 33 countries which gives us the ability to continue to expand our reach in to more households in more regions of the globe.

Global Hydranencephaly Foundation has reached over 700 families in 33 countries, providing support and advocacy services as best as we are able from where we are in Northern New Mexico currently. We hope to amp up our awareness efforts and gain a greater spotlight in the nonprofit world to gain more momentum for our mission and continue to reach even more families. We are hopeful that this will allow us to get our foot in the door of the medical community and have a greater impact on the diagnosis and care possibilities that exist upon diagnosis.

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls, open-door policy,

  • 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Due to recent feedback, we are in the process of adjusting our language to be more inclusive of various cultural and religious systems of beliefs. Ex. our Hydran-Angels Families group is in the process of transitioning the name to respect those families who do not hold a belief in angels, heaven, etc. and to respect those with varying beliefs in the after-death and how to support those beliefs with sensitivity.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to get honest feedback from the people we serve, It is difficult to identify actionable feedback,

Financials

BRAYDEN ALEXANDER GLOBAL FOUNDATION FOR HYDRANENCEPHALY
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Operations

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

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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

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BRAYDEN ALEXANDER GLOBAL FOUNDATION FOR HYDRANENCEPHALY

Board of directors
as of 10/20/2021
SOURCE: Self-reported by organization
Board co-chair

Alicia Harper

Global Hydranencephaly Foundation

Term: 2011 -


Board co-chair

Amanda McKee

Global Hydranencephaly Foundation

Term: 2021 -

Shylo Oakley

Global Hydranencephaly Foundation

Amanda McKee

Global Hydranencephaly Foundation

Melissa Shenefelt

Global Hydranencephaly Foundation

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 ? No
  • 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

Organizational demographics

SOURCE: Self-reported; last updated 10/20/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 01/13/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.