M-CM NETWORK

Chatham, NY   |  https://www.m-cm.net

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 info

2010

Principal Officer

Christy Collins

Main address

PO Box 97

Chatham, NY 12037 USA

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EIN

27-3510708

NTEE code info

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

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Our programs

SOURCE: Self-reported by organization

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.

Population(s) Served

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.

Population(s) Served

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.

Population(s) Served

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2018

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

Financials

M-CM NETWORK
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Operations

The people, governance practices, and partners that make the organization tick.

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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 directors
as of 03/07/2018
SOURCE: Self-reported by organization
Board chair

Christy Collins

Leslie Sanderson

Marielle Kulling

Mike Corry

Mike O'Donnell