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MECP2 DUPLICATION FOUNDATION

TUCSON, AZ · EIN 832819009 · Form 990EZ · FY2020 · NTEE H80 · Medical Research · Micro (<$100K) · www.mecp2d.org
revenue
$97K
expenses
$22K
net assets
$105K
employees
—
mission · from form 990

It is the mission of the MECP2 Duplication Foundation to provide families diagnosed with MECP2 duplication syndrome information and support, to increase awareness of the disorder, and to provide funding to cutting edge research that will one day treat those affected and enhance their quality of life.

profile · synthesized from sources

The MECP2 Duplication Foundation is a family-founded organization that supports families affected by MECP2 Duplication Syndrome. It provides information and resources, raises awareness of the disorder, and funds cutting-edge research to find treatments and improve the quality of life for those affected.

named programs · 7 · from sources

what they call their work

Find a Doctor
Offers resources and a directory of parent-approved physicians for MECP2 Duplication Syndrome families.
MDS Community Mailing List
An email list providing updates on research, family support guides, webinars, and opportunities to connect with other families.
MECP2 Duplication Syndrome Awareness Month
An initiative in July to raise awareness about MECP2 Duplication Syndrome through various activities, including social media campaigns.
Medical Advocacy Guide
A free downloadable guide to help parents partner with their medical team as advocates for their child, including an example letter of medical necessity and health record.
Newly Diagnosed Resources
Provides information and resources for families with a new diagnosis of MECP2 Duplication Syndrome to help them learn about the condition and navigate care.
The Clinical Guide
A free guide for parents to provide to local medical providers, offering a brief overview of MECP2 Duplication Syndrome and its potential symptoms to aid communication.
The Guide for New Parents
A free guide offering information and support for new parents of children diagnosed with MECP2 Duplication Syndrome, covering topics like daily life, education, therapies, and genetics.
activities · 3 clusters

what they do

  • Disease Awareness & Education Campaigns 1 activity
    • Promote MECP2 Duplication Awareness Month
      Designates and promotes July as MECP2 Duplication Awareness Month to build public awareness for the condition.
  • Parent-to-Parent Support for Special Needs 1 activity
    • Provide family support and resources
      Offers support to families affected by MECP2 Duplication Syndrome through email updates on research, family support guides, webinars, opportunities to connect with other families, and sharing family stories.
  • Uncategorized 6 activities
    • Develop and distribute informational guides for parents and medical professionals
      Creates and distributes guides such as "The Guide for New Parents," "The Clinical Guide," and a "Medical Advocacy Guide" to provide information, support, and tools for parents of children with MECP2 Duplication Syndrome and for medical professionals.
    • Family support and connection programs
      Provides email-based updates, webinars, parent-approved resources, physician referrals, and family stories to support and connect families affected by MECP2 Duplication Syndrome.
    • Family support resources development
      Creates and distributes practical guides for families, including "The Guide for New Parents," a clinical guide for medical providers, and a medical advocacy guide to support care coordination.
    • Fund research for MECP2 Duplication Syndrome
      Provides funding for research projects aimed at developing treatments for MECP2 Duplication Syndrome and improving the quality of life for affected individuals, including supporting research at the Jan and Dan Neurological Research Center.
    • MECP2 Duplication Awareness Month
      Designates and promotes July as MECP2 Duplication Syndrome Awareness Month to increase public awareness and understanding of the condition.
    • Research funding and support
      Funds and supports research initiatives aimed at developing treatments for MECP2 Duplication Syndrome, including multiple projects at the Jan and Dan Neurological Research Center.
financials · form 990EZ · fy2020

the money

revenue
Total revenue$97K
Contributions & grants$24K25%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$22K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$105K
Cash—
Investments—
Liabilities—
Net assets$105K
1 years on record · 2020–2020
leadership · form 990 part vii · fy2020

who runs it

board members · 2
  • ARON SCHMIDT — Director
  • RANDALL DECKER — Director
relationships · 8

who they work with

  • Children's Hospital Colorado Partner — Listed as an additional resource for information on MECP2 Duplication Syndrome.
  • Gene Reviews Partner — Listed as an additional resource for information on MECP2 Duplication Syndrome.
  • Jan and Dan Neurological Research Center Partner — Supported multiple research projects at the center.
  • MECP2 Duplication Foundation Partner — Provides resources and support for families affected by MECP2 duplication.
  • National Institutes of Health Partner — Collaborates on research initiatives related to MECP2 Duplication Syndrome.
  • National Institutes of Health - US National Library of Medicine Partner — Listed as an additional resource for information on MECP2 Duplication Syndrome.
  • National Organization of Rare Disorders Partner — Listed as an additional resource for information on MECP2 Duplication Syndrome.
  • ghr.nlm.nih.gov Partner — Cited as a source for information on MECP2 Duplication Syndrome.