M-CM NETWORK
Mission
The M-CM Network promotes knowledge, awareness and patient-centered research about macrocephaly-capillary malformation (M-CM) syndrome to improve the lives of patients and their families. M-CM is a rare genetic syndrome causing irregular growth. Common characteristics are brain overgrowth, low muscle tone, developmental disabilities, vascular birthmarks, and body asymmetry.
Ruling year
2010
Principal Officer
Christy Collins
Main address
PO Box 97
Chatham, NY 12037 USA
EIN
27-3510708
NTEE code
Single Organization Support (E11)
IRS filing requirement
This organization is required to file an IRS Form 990-N.
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Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Information Pamphlet Distribution
Distribute informational brochures to medical offices and families.
Contact Registry
The M-CM Network contact registry is used to inform individuals with M-CM and their guardians about:
opportunities to participate in research
opportunities to contribute data
discoveries about M-CM that may impact care decisions.
All information is anonymous and sign-up online is quick and easy.
Management Guidelines Distribution
With the publication of the gene discovery for M-CM in 2012, the first published management guidelines were made available in print form to all contact registrants.
Where we work
Affiliations & memberships
National Organization for Rare Disorders - Member 2018
External reviews
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 goal of the M-CM Network is to establish an effective long-term plan for advancing research and understanding of M-CM. The founding objectives of the M-CM Network are to establish a longitudinal registry and a biobank leading to a standard of care and a means of support for patients and their families.
What are the organization's key strategies for making this happen?
The M-CM Network web site provides a central place for individuals with M-CM and their families to connect with one another and to obtain support and information. The registry allows research findings to be distributed. The fundraisers by patient families and friends provide donations to further research initiatives, meet with doctors and widen our reach.
What are the organization's capabilities for doing this?
What have they accomplished so far and what's next?
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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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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M-CM NETWORK
Board of directorsas of 03/07/2018
Christy Collins
Leslie Sanderson
Marielle Kulling
Mike Corry
Mike O'Donnell
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