Health—General & Rehabilitative

M-CM NETWORK

  • Chatham, NY
  • http://www.m-cm.net

Mission Statement

Macrocephaly-capillary malformation (M-CM) is a multiple malformation syndrome causing body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs.
M-CM Network provides comprehensive medical information about M-CM, aiding in diagnosis and treatment decisions. Our goal is to establish a disease registry to collect data about affected individuals so that we can greatly expand the scope of what is known about M-CM.

Main Programs

  1. Information Pamphlet Distribution
  2. Contact Registry
  3. Management Guidelines Distribution

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Service Areas

Self-reported

International

The web site and contact registry connect individuals and their families from all around the globe.

ruling year

2010

Principal Officer

Self-reported

Christy Collins

Keywords

Self-reported

M-CM, macrocephaly-capillary malformation syndrome

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EIN

27-3510708

 Number

3649905212

Contact

Cause Area (NTEE Code)

Single Organization Support (E11)

IRS Filing Requirement

This organization is required to file an IRS Form 990-N.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

2012 was our first full year in operation. It was a busy year as we met with researchers and launched a registry which currently contains contact information for 102 individuals with M-CM from all over the world. When the gene discovery for M-CM was published, the registry demonstrated its usefulness as we obtained permission from the publisher to redistribute the management guidelines to all registrants. On our website, a new section was launched dedicated to family stories which currently has six stories with more being added all the time.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Information Pamphlet Distribution

Distribute informational brochures to medical offices and families.

Category

Population(s) Served

Budget

Program 2

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.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

General Public/Unspecified

Budget

Program 3

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.

Category

People/Families of People with Health Conditions

Population(s) Served

Children and Youth (infants - 19 years.)

Adults

None

Budget

Charting Impact

Self-reported by organization

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

  1. 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.
  2. 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.
  3. What are the organization's capabilities for doing this?
    Not available.
  4. How will they know if they are making progress?
    Not available.
  5. What have and haven't they accomplished so far?
    Not available.
Service Areas

Self-reported

International

The web site and contact registry connect individuals and their families from all around the globe.

Social Media

Blog

Affiliations + Memberships

National Organization for Rare Disorders - Member

External Reviews

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Financials

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Operations

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

M-CM NETWORK

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2015 and 2014
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Principal Officer

Christy Collins

Governance

BOARD CHAIR

Christy Collins

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization


RESPONSE NOT PROVIDED

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?