BRAYDEN ALEXANDER GLOBAL FOUNDATION FOR HYDRANENCEPHALY
"Believe in the Impossible!"
Programs and results
What we aim to solve
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
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.
Bereaved Families Support
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.
The Hive - Equipment and Care Item Exchange
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.
Hospital Care Package
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.
Fiscal Sponsorship Program
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.
Volunteer Grant Program
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.
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
External reviews
Videos
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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Which of the following feedback practices does your organization routinely carry out?
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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
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild 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.
BRAYDEN ALEXANDER GLOBAL FOUNDATION FOR HYDRANENCEPHALY
Board of directorsas of 02/22/2022
Alicia Harper
Global Hydranencephaly Foundation
Term: 2011 -
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
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 01/13/2021GuideStar 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
- 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.
- 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.