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M-CM NETWORK
Chatham, NY · EIN 273510708 · Form 990EZ · FY2025 · NTEE P20 · Human Services · Micro (<$100K) · m-cm.net
revenue
$29K
expenses
$13K
net assets
$125K
employees
—
mission · from form 990

Promote research, education, and advocacy to benefit rare disease patients with macrocephaly-capillary malformation syndrome (also known as M-CM or MCAP).

profile · synthesized from sources

M-CM NETWORK supports individuals affected by macrocephaly-capillary malformation syndrome (M-CM or MCAP), a rare genetic disorder. The organization promotes research, education, and advocacy to improve diagnosis, care, and quality of life for patients. It serves as a central resource for families, medical professionals, and researchers worldwide.

named programs · 3 · from sources

What they call their work

Community Building
Connects families and caregivers through online platforms and shared resources to reduce isolation and support advocacy
Medical Information and Education
Provides up-to-date, accessible information about M-CM/MCAP, including diagnosis, symptoms, and management, for patients and clinicians
Patient Stories
Shares personal narratives of individuals living with M-CM/MCAP to raise awareness, provide community support, and educate families and medical professionals
activities · 4 groups

What they do

  • Familial Support for Rare Genetic Conditions 5 activities
    • Community building and peer support for MCAP families
      Hosts and supports a patient and family community primarily through social media and online platforms to facilitate connections, shared experiences, and peer support for those affected by MCAP.
    • Direct family and patient support services
      Provides free advice, emotional support, and practical tips to families of children with MCAP syndrome; organizes UK-based gatherings for affected families; and operates platforms for parents to share experiences and information to aid diagnosis and coping.
    • Education and awareness programs for M-CM
      Provides education and awareness opportunities about M-CM for families and the medical community, including sharing family stories and maintaining a resource website with current information on MCAP to raise awareness and support diagnosis.
    • Facilitating access to medical evaluations and therapies
      Supports families in obtaining critical medical services including genetic testing, brain MRI assessments, and early intervention therapies such as physical, occupational, speech, and vision therapy for infants with M-CM.
    • Supporting clinical research and diagnostic development for M-CM
      Facilitates the advancement of medical understanding and diagnostics for M-CM through collaboration with families and research institutions, including supporting the development of the first clinical test for M-CM and enrolling patients in research studies at institutions like Seattle Children’s Hospital.
  • Genetic and Neurological Disease Research Funding 2 activities
    • Funding research on M-CM and related genetic conditions
      Awards grants to support research on M-CM and related overgrowth syndromes, including funding research at the Neurodevelopment Lab of Dr. Achira Roy at JNCASR and contributing to studies that identified PIK3CA gene mutations as the cause of M-CM.
    • Providing financial support for genetic testing
      Funds specialized genetic testing for patients with M-CM/MCAP who face financial barriers through a pilot grant program that distributed five grants.
  • Rare Genetic Disease Research and Advocacy 1 activity
    • Advocacy for M-CM/MCAP policy recognition and drug approval
      Conducts advocacy initiatives to improve recognition and treatment of macrocephaly-capillary malformation syndrome (M-CM/MCAP), including achieving inclusion of MCAP on the Social Security Administration Compassionate Allowance List and supporting FDA approval of alpelisib (VIJOICE) for PIK3CA-related overgrowth spectrum by contributing real-world evidence from compassionate use programs.
  • Nonprofit Retail and Merchandise Sales 1 activity
    • Production and distribution of patient-centered materials
      Produces and sells a 2026 wall calendar featuring photos from nearly 100 M-CM patient families globally as a community engagement and fundraising project.
financials · form 990EZ · fy2025
revenue
Total revenue$29K
Contributions & grants$28K97%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$13K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$0
balance sheet
Total assets$125K
Cash—
Investments—
Liabilities—
Net assets$125K
6 years on record · 2020–2025 · YoY revenue +28.8%
leadership · form 990 part vii · fy2025

Who runs it

board members · 2
  • Marielle Kulling — Director
  • Michael O'Donnell — Director
relationships · 23

Who they work with

  • Baylor University College of Medicine Laboratory Partner — Conducted genetic sequencing that confirmed Sarah’s MCAP diagnosis by identifying a PIK3CA gene mutation.
  • Bonfire Partner — Online storefront platform used to sell t-shirts for M-CM awareness, with a portion of sales benefiting the M-CM Network.
  • Cedars-Sinai Partner — Geneticist and neurosurgeon at Cedars-Sinai confirmed diagnosis and recommended treatment for Matthew.
  • Children's Hospital Number 3 Partner — Makenna received final neurosurgical care at Children's Hospital Number 3 in Dayton, OH.
  • Children’s Hospital of Philadelphia Partner — Provides specialized medical care and follow-up for patients with M-CM, including genetics, neurology, orthopedics, and urology services.
  • Children’s Mercy Hospital Partner — Medical genetics team at Children’s Mercy Hospital provided formal diagnosis of M-CM for Makenna.
  • Fidel y Laura Partner — Parents of a child with M-CM syndrome who share their family's experience to support the organization's mission.
  • Global Genes Foundation Network — Member of the Global Genes Foundation Alliance.
  • Heidi Frost Partner — Curates patient stories for M-CM NETWORK
  • JNCASR Partner — Institution hosting research on M-CM funded by the organization.
  • Lulu.com Partner — Print-on-demand service used to produce and distribute the M-CM Network 2026 wall calendar.
  • NORD Network — Member of the National Organization for Rare Disorders network.
  • Neurodevelopment Lab of Dr. Achira Roy Partner — Funded research on neurodevelopment related to M-CM.
  • Novartis Partner — Collaborated with Novartis on compassionate use and real-world data collection for alpelisib (VIJOICE) in PROS patients, including M-CM/MCAP.
  • Riley Hospital for Children Partner — Makenna received care at Riley Hospital for Children after relocating to Indianapolis, IN.
  • Seattle Children's Hospital Partner — Conducts research on M-CM that the organization supports through patient enrollment.
  • Segmental Overgrowth Study Partner — Presented findings at the 7th annual UK M-CM meet.
  • Spanish Association for M-CM Network — Support organization for families affected by M-CM that provides connection and shared resources
  • Tulane University Genetics Department Partner — Collaborated with M-CM Network-affiliated professionals to diagnose Sarah with MCAP through coordinated genetic evaluation.
  • UK get-together Network — Hosts in-person gatherings for families affected by MCAP syndrome in the UK.
  • USF Government — Collaborates with USF genetics professionals, including Dr. Kathleen Pope, to coordinate care and diagnosis for patients with MCAP.
  • University of Michigan hospital Partner — Referred patient to pediatric orthopedic specialists for diagnosis and monitoring of hemihypertrophy.
  • Wesley Medical Hospital Partner — Makenna was born and underwent initial surgeries at Wesley Medical Hospital in Wichita, KS.
strategies · 4

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.

  • Integrated Research-Education-Advocacy Model
    methodology: integrated_research_education_advocacy
    By combining research, education, and advocacy in a unified framework, M-CM NETWORK advances patient outcomes and systemic change, because synergistic efforts across these domains amplify impact beyond what any single approach could achieve.
  • Patient-Engaged Research and Peer Support Network
    methodology: patient_engaged_research
    By involving affected families as research partners and connecting them through peer support, the network improves health outcomes and drives advocacy, because lived experience enhances research relevance and reduces isolation, which in turn increases engagement and collective power.
  • Real-World Evidence Advocacy
    methodology: real_world_evidence_advocacy
    By advocating for the use of real-world evidence from compassionate use programs, the organization supports regulatory approval of treatments when traditional trials are not feasible, because patient outcome data from actual clinical use can substitute for controlled trial data in rare disease contexts.
  • Storytelling and Digital Community Infrastructure
    methodology: storytelling_for_healing
    By sharing personal stories and maintaining a centralized digital platform, the network improves diagnosis, care coordination, and healing, because accessible narratives reduce diagnostic delays and empower families through peer-driven knowledge and emotional support.