named programs · 5 · from sources
What they call their work
Billie's Bravery Against Bullies
Children's book program promoting resilience and awareness for kids with growth hormone deficiency
Growth Through Awareness
Public awareness campaign promoting early diagnosis and treatment of childhood growth disorders
Patient Assistance Grants (PCPA Grant)
Provides financial assistance to patients in need, funded in part by proceeds from book sales
Priscilla’s Brave Adventure with CPP
Children's book program addressing Central Precocious Puberty and emotional well-being
Research Grants
Supports research initiatives focused on rare growth, bone, and endocrine conditions
activities · 4 groups
What they do
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducting research and publishing educational materials on growth and endocrine conditionsAdvances research on rare growth, bone, and endocrine conditions and produces accessible educational resources, including children's books such as "Billie’s Bravery Against Bullies" and "Priscilla’s Brave Adventure with CPP," to support affected children and raise awareness.
- Delivering public awareness and advocacy initiativesConducts public outreach and awareness campaigns to increase understanding of rare childhood growth disorders, promote early diagnosis and treatment, and advocate for children with growth conditions at the organizational level.
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Medical Professional Education & Training 1 activity
- Building medical and professional capacity through training and educationOffers training programs, educational resources, and professional development opportunities for medical specialists and healthcare providers on growth and bone conditions, including a non-paid internship program that provides mentorship and hands-on experience in event planning, marketing, and public relations.
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Pediatric Medical Care and Research Support 1 activity
- Funding patient assistance and research through grant programsProvides patient assistance grants and research grants to support individuals with rare growth, bone, and endocrine conditions and to advance understanding and treatment of these disorders; funds the PCPA Grant program through proceeds from children's book sales.
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Familial Support for Rare Genetic Conditions 1 activity
- Providing direct support services for individuals with rare growth, bone, and endocrine conditionsOffers psychosocial, educational, and informational support services for children, adults, and families affected by rare growth, bone, and endocrine conditions, including guidance on growth development, school preparation, and condition-specific concerns such as Turner Syndrome and precocious puberty.
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financials · form 990 · fy2024
revenue
Total revenue$1.45M
Contributions & grants$1.71M119%
Program service revenue$00%
Investment income$55K4%
Other revenue$-324K
expenses
Total expenses$1.04M
Program expenses87%
Admin / overhead13%
Fundraising0%
Salaries & benefits$196K
Grants paid out$24K
Largest expense lineFacilities
balance sheet
Total assets$2.25M
Cash$792K
Investments$1.46M
Liabilities$40K
Net assets$2.21M
Liquid reserves25.9 mo
5 years on record · 2020–2024 · YoY revenue +25.1%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| DAPHNE PLUMP | EXECUTIVE DIRECTOR | 40 | $130K |
board members · 15
- ADRIANA CARRILLO — DIRECTOR
- AMRIT PS BHANGOO — DIRECTOR
- ANGELA VERARDO — DIRECTOR
- ANNA RYABETS-LIENHARD — DIRECTOR
- CATHERINE METZINGER — CFO
- EMILY GERMAIN-LEE — VICE PRESIDENT
- JOEL STEELMAN — SECRETARY - TREASURER
- JUAN MEJIA-OTERO — DIRECTOR
- KENT REIFSCHNEIDER — CHIEF COMPLIANCE OFFICER
- LINDA HUNT — DIRECTOR
- MARCO DANON — DIRECTOR
- NATAVUT PUNYASAVATSUT — DIRECTOR
- OSCAR ESCOBAR — DIRECTOR
- PISIT DUKE PITUKCHEEWANONT — PRESIDENT
- SASIGARN BOWDEN — DIRECTOR
relationships · 4
Who they work with
- Human Growth Foundation PCPA Grant Partner — Grant program funded through proceeds from book sales, supporting individuals affected by growth disorders.
- NGenla Partner — Collaborates with NGenla, a treatment provider for growth disorders.
- Patricia D. Costa Partner — Longtime Executive Director and advocate for the organization
- Sogroya Partner — Partners with Sogroya to support awareness and access to growth hormone treatments.
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Early Detection Through Awareness Campaignsmethodology: early_detection_awarenessBy increasing public and clinical awareness of rare childhood growth disorders, the organization enables earlier diagnosis and treatment initiation, because early identification improves long-term health outcomes.
- Integrated Research, Advocacy, and Care Modelmethodology: integrated_support_modelBy combining research, patient advocacy, education, and community support, the organization advances clinical understanding and improves quality of life for individuals with rare growth, bone, and endocrine conditions, because integrated services address both medical and psychosocial dimensions of care.
- Psychosocial Support Through Narrative and Representationmethodology: storytelling_for_emotional_supportBy using storytelling and relatable protagonists in children's literature, the organization helps children with growth disorders understand their condition and build resilience, because emotional identification with characters fosters coping and self-worth.