named programs · 2 · from sources
what they call their work
NKH Research Advocacy
Supports and promotes gene therapy research for Nonketotic Hyperglycinemia, including funding initiatives at institutions like the Boler-Parseghian Center for Rare Diseases at Notre Dame
ZoomWalkathon.com
Virtual walkathon platform launched by the foundation to raise funds and awareness for NKH and other rare diseases through online participation and video conferencing
activities · 8 groups
what they do
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Parent-to-Parent Support for Special Needs 4 activities
- Facilitate online community for alternative treatments in infantsOperates a private Facebook group where caregivers and families discuss alternative and natural treatments for babies with medical challenges, supplemented by research resources in a GUIDES tab.
- Facilitate online community for alternative treatments in infantsRuns a closed Facebook group where families and caregivers discuss alternative and natural treatments for medical challenges in babies, with curated research available in a GUIDES tab.
- Facilitating peer support and information sharingThe foundation operates a closed Facebook Group for families to discuss alternative and natural treatments for medical challenges in babies, with research posted in a GUIDES TAB.
- Operate online community for alternative treatments and research sharingMaintains a closed Facebook Group with a dedicated GUIDES TAB to share research and discuss alternative and natural treatments for medical challenges in infants, particularly those with rare conditions.
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Gene Therapy Access Advocacy 3 activities
- Advocate for rare disease awareness and gene therapyEngages in ongoing advocacy to raise awareness about rare diseases and the importance of gene therapy, with public efforts dating back to January 2019.
- Raise awareness for rare diseases and gene therapyEngages in ongoing advocacy to raise public awareness about rare diseases and the potential of gene therapy, with efforts active since January 2019.
- Raise awareness for rare diseases and gene therapyEngages in ongoing advocacy to increase public understanding of rare diseases and the potential of gene therapy, with efforts active since January 2019.
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Gene Therapy Research for Rare Genetic Disorders 3 activities
- Develop curative treatments for nonketotic hyperglycinemia (NKH)Conducts and supports research aimed at developing curative treatments for nonketotic hyperglycinemia (NKH), with a focus on gene replacement therapy.
- Develop curative treatments for nonketotic hyperglycinemia (NKH)Conducts and supports research aimed at developing curative treatments for nonketotic hyperglycinemia (NKH), a rare genetic disorder.
- Funding and developing curative treatments for Nonketotic Hyperglycinemia (NKH)The foundation seeks to develop curative treatments for Nonketotic Hyperglycinemia (NKH), including funding gene replacement therapy research.
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Comfort and Care Kits for Hospitalized Youth 3 activities
- Distribute NICU care kits at Phoenix Children's HospitalProvides care kits to families with infants in the Neonatal Intensive Care Unit (NICU) at Phoenix Children's Hospital.
- Distribute NICU care kits at Phoenix Children's HospitalProvides care kits to families in the Neonatal Intensive Care Unit (NICU) at Phoenix Children's Hospital to support infants and caregivers.
- Providing NICU care kitsThe foundation provides care kits for the Neonatal Intensive Care Unit (NICU) at Phoenix Children's Hospital.
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Financial Assistance for Medical Devices 1 activity
- Provide financial assistance for uncovered medical therapiesOffers financial support to families for medical treatments and services not covered by insurance, including laser therapy, movement lessons, DNA testing kits, and NICU care kits.
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Pediatric & Specialty Disease Research Funding 1 activity
- Raising awareness for rare diseasesThe foundation raises awareness for rare diseases and gene therapy, and helps families facing similar situations with rare medical conditions.
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Financial Assistance for Families 1 activity
- Support families affected by rare diseasesProvides support and raises awareness for families across the nation dealing with rare medical conditions, inspired by the Culp family’s experience with their son Lucas John Culp, who has NKH.
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Uncategorized 9 activities
- Build virtual fundraising capacity for nonprofitsDeveloped ZoomWalkathon.com as a reusable virtual platform enabling nonprofits to host online walkathon fundraisers, supporting organizations focused on rare diseases.
- Host virtual walkathon fundraisers for rare disease researchOrganizes and hosts virtual walkathon events, such as "Zoom the Room for NKH," to raise awareness and funds for gene replacement therapy research, with participation from over 100 attendees across the U.S. and U.K.
- Host virtual walkathons to raise awareness and funds for NKHOrganizes virtual "Zoom the Room" walkathons to raise public awareness about nonketotic hyperglycinemia (NKH) and raise funds for gene replacement therapy research.
- Host virtual walkathons to raise awareness and funds for NKHOrganizes virtual "Zoom the Room" walkathons to raise public awareness about nonketotic hyperglycinemia (NKH) and to generate funds for gene replacement therapy research.
- Operate ZoomWalkathon.com platform for nonprofit fundraisingMaintains and operates ZoomWalkathon.com, a virtual platform enabling nonprofits to host online walkathon fundraisers; used for campaigns like "Zoom the Room for NKH" with over 100 participants from the U.S. and U.K.
- Operate online platform for rare disease fundraisingManages ZoomWalkathon.com, a virtual platform enabling nonprofits and rare disease communities to host online walkathon fundraisers; used by over 100 participants from the U.S. and U.K. in "Zoom the Room for NKH" campaigns.
- Operating a virtual walkathon platform for fundraisingThe foundation launched and operates ZoomWalkathon.com, a virtual website platform to host online walkathon fundraisers for nonprofits, including its own "Zoom the Room for NKH" campaigns, which have attracted over 100 attendees from the US and UK.
- Provide financial assistance for uncovered medical therapiesOffers financial support for treatments not covered by insurance, including laser therapy, movement lessons, DNA testing kits, and NICU care kits, primarily for families affected by rare diseases like NKH.
- Providing financial assistance for therapies and medical needsThe foundation provides financial assistance for various therapies not covered by insurance, such as laser therapy, movement lessons, and DNA testing kits, for children with rare medical conditions.
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financials · form 990 · fy2021
revenue
Total revenue$224K
Contributions & grants$224K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$182K
Program expenses79%
Admin / overhead17%
Fundraising3%
Salaries & benefits$0
Grants paid out$38K
Largest expense lineFacilities
balance sheet
Total assets$71K
Cash$69K
Investments$0
Liabilities$9K
Net assets$63K
Liquid reserves4.5 mo
2 years on record · 2020–2021 · YoY revenue +165.9%
leadership · form 990 part vii · fy2021
who runs it
board members · 1
- BRANDON CULP — OFFICER AND
relationships · 6
who they work with
- Boler-Parseghian Center for Rare Disease Partner — Encourages donations to support NKH Research at the center.
- Boler-Parseghian Center for Rare Disease Partner — Supports NKH Research at the center.
- Facebook Group Partner — Operates a closed Facebook Group for discussing alternative and natural treatments.
- Notre Dame Partner — Supports NKH Research at Notre Dame.
- Notre Dame Partner — Supports a scholarship for NKH Research at Notre Dame.
- Phoenix Children’s Hospital Partner — Provides care kits for the NICU at the hospital.