CDG CARE

Where CARE Grows

COLORADO SPGS, CO   |  www.cdgcare.com

Mission

To promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for scientific research to advance the diagnosis and treatment of CDG.

Ruling year info

2016

President

Andrea Miller JD, MHA

Main address

PO BOX 38832

COLORADO SPGS, CO 80937 USA

Show more contact info

EIN

81-0769799

NTEE code info

Alliance/Advocacy Organizations (G01)

Birth Defects, Genetic Diseases Research (H20)

Fund Raising and/or Fund Distribution (S12)

IRS filing requirement

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

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

CDG CARE is a nonprofit 501(c)(3) founded by parents seeking information and support for a group of disorders known as Congenital Disorders of Glycosylation (CDG) & NGLY1-deficiency. Established in 2014, our mission is to promote greater awareness of CDGs and to advocate for and fund scientific research to advance the diagnosis and treatment of CDGs. CDGs are a group of currently 170+ rare metabolic disorders that affect a complex process called glycosylation. The neurologic involvement in children, adolescents and adults affected by CDG is moderate to severe and most commonly individuals are affected with significant physical and developmental disability. Because of the neurologic involvement in patients, it is most commonly assimilated to cerebral palsy, and it is presumed to be a vast majority of individuals misdiagnosed. Therefore, our primary focus/problem is to raise CDG awareness and advocate for research and treatments that will improve the health outcomes for our families.

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?

Biennial National CDG Family Education Conference

This biennial event serves to facilitate the meeting and collaboration of medical professionals and families in order to share knowledge and experience and discuss common issues of patients living with CDG. Through this unique organizational partnership, an inclusive and collaborative community infrastructure is supported which enables medical professionals and families to unite and enhance CDG research, knowledge, therapeutic, and alternative treatment strategies.

Population(s) Served
Families
People with diseases and illnesses

To provide funding to families to 1) attend the National CDG Family Educational Conference; 2) participate in specific CDG clinical trials to advance CDG research; or 3) improve access to a clinical consultation with a CDG medical expert due to unique and/or urgent medical circumstances.

Population(s) Served
Families
People with diseases and illnesses

CDG CARE annually solicits Letters of Intent (LOIs) to support research grants that are designed to promote science that will lead to greater understanding, treatments and a cure for CDG.

Population(s) Served
Children and youth
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of paid participants in conferences

This metric is no longer tracked.
Totals By Year
Related Program

Biennial National CDG Family Education Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This is a measure used to evaluate the quality, interest and attendance of our biennial CDG/NGLY1 Scientific & Family Conference. The Conference was held in Feb. 2022 and we had 140 paid participants.

Number of free participants in conferences

This metric is no longer tracked.
Totals By Year
Related Program

Biennial National CDG Family Education Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This is a measure of how many families/professionals we have been able to grant travel scholarships to attend. This is a biennial event, the metric is measured in families and we measured 14 in 2022.

Number of adults with disabilities receiving sufficient social and emotional support

This metric is no longer tracked.
Totals By Year
Population(s) Served

Families

Related Program

Family Education and Medical Travel Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This is a new metric to measure the enrollment of CDG & NGLY1 families into the new Family Support Network. This membership provides direct social, emotional and resource support to families globally.

Number of research grants supported

This metric is no longer tracked.
Totals By Year
Population(s) Served

Families

Related Program

CDG CARE Research Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This metric measures the ability of CDG CARE to raise funds to support clinical and patient-led research programs. CDG CARE has directly supported over $200,000 in grants to advance treatments for CDG

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 primary aims of CDG CARE are: 1) to promote greater awareness and understanding of CDG & NGLY1, 2) to provide information, support and education to families affected by CDG & NGLY1, and 3) to advocate for and fund scientific research and patient-led initiatives to advance the diagnosis and treatment of CDGs & NGLY1.

To achieve these goals, CDG CARE provides information and support to families and medical professionals throughout the USA and around the globe, increases public awareness and understanding of CDG through an annual CDG Awareness Day and FACT Campaign, develops resource programs, webinars and opportunities to educate the community and help individuals build strengths and meet challenges from early childhood through adulthood, and supports credible research projects that are designed to improve the quality of lives of persons and their families who are affected by CDG & NGLY1.

CDG CARE provides information and support to CDG families and the professionals who work with them through the development and dissemination of a quarterly E-Newsletter, along with coordinating a biennial CDG Scientific & Family Conference which is held in the USA. CDG CARE provides travel scholarship funding for newly diagnosed families and first-time attendees to be able to overcome any cost barriers in ensuring they are able to participate in this unique and collaborative event.

CDG CARE increases public awareness and understanding of CDG through an annual May 16 - CDG Awareness Day Campaign. Each year, CDG CARE supports the awareness efforts leading up to the globally recognized Rare Disease Day (RDD) campaign led by EURORDIS and NORD. Immediately following international RDD, CDG CARE launches efforts to raise public awareness of CDG on May 16th of each year. There are multiple strategic components of this Campaign including, FACT Series, Fundraising, State Proclamation requests, and Go Green for CDG! efforts. Community events are held throughout the United States at schools, health institutions, churches, legislative offices, and community gatherings sponsored by families affected by CDG. Each year the campaign grows and has a greater impact, leading to a greater number of children and young adults being accurately diagnosed.

CDG CARE also supports and funds credible research projects that aim to advance the diagnosis and possible treatment alternatives for children affected by CDG. Through the CDG CARE Annual Fundraising Campaign, the goal is to raise $50,000 to fund credible research focused on improving the health outcomes and lives of individuals affected by CDG. CDG CARE announces a Call for Research Proposals each Fall and reviews research applications received in December. Credible project are reviewed by a 9-member Research Review Committee using NIH grant scoring criteria and one project is ultimately funded in January/February with an initiation date to begin in March of the following year.

CDG CARE is comprised of an engaged nine-member volunteer Board of Directors and an expert panel of medical and research professionals who serve on the organization’s Medical Advisory Board. The Boards meet via Zoom quarterly throughout the year, but also communicate frequently via email correspondence to address issues and stay current on organizational initiatives throughout the calendar year.

Each Board member serves on one or more CDG CARE subcommittees and/or task forces. Subcommittees are led by a Chairperson, and consist of a balance of members from both the Board of Directors, the Medical Advisory Board as appropriate, and in some instances, community representatives from the broader CDG community. All work performed is conducted on a volunteer basis and reports from subcommittees/task forces, are presented at each of the quarterly Board of Directors meeting.

Over the past 6 years, CDG CARE has co-hosted four biennial CDG Scientific and Family Conference events in San Diego, CA. Through these collaborative efforts with medical institutions from throughout the United States, our efforts have brought together over 100 medical specialists and 76 families who promote the education, awareness and boost research opportunities in the field of CDG & NGLY1. CDG CARE has also developed and disseminated 15 editions to the CDG CARE E-Newsletter which is shared through social media and directly distributed to over 1,500 emails subscribers from around the globe.

On May 16th of each year, CDG CARE organizes a global CDG Awareness Campaign. With an intense, effective and participatory social media and email dissemination program, we promote a CDG “Just the Facts” Series, a CDG Heroes Spotlight, and targeted Campaign and GoGreen! images which are viewed tens of thousands of times over the course of the 8-week campaign. Through this initiative, the CDG & NGLY1 Community come together, both virtually and in-person, share social media content, host global fundraisers and awareness events and take action to raise awareness and support research related to CDG & NGLY1.

Through annual CDG Awareness Day fundraising campaigns, CDG CARE supporters have raised over $300,000. To date, we have currently funded $200,000 in research projects, $30,000 in family travel scholarships and $18,000 to our fellow CDG Patient Associations to collaborate and support their initiatives. CDG CARE has also recruited volunteers throughout the United States to serve as State Advocate Representatives who request from their respective State Governors that each year May 16th be officially Proclaimed as CDG Awareness Day throughout their State. Of the efforts received over the past 5 years, we have 26 different State Governors who have supported our efforts and the USA was Painted GREEN in support of CDG Awareness Day.

On the horizon for the CDG CARE Board of Directors is the aim to diversity our outreach within the USA and improve efforts to increase awareness and diagnostic testing throughout Latin America. CDG CARE has also recently been contacted by medical professionals in China and France who would like to partner in efforts to tailor resources and educational opportunities for CDG patient populations in these regions. CDG CARE will also continue to strive to reach more rural US communities, provide patients and their families with resources to enable them to participate in medical research and clinical trials, and overall to ultimately develop effective therapies for individuals diagnosed with CDG & NGLY1 in the near future.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients and families who have received a confirmed diagnosis of CDG or NGLY1-Deficiency and the medical professionals who care for them.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    CDG CARE routinely includes survey for a pulse on the Community in Family Support Network newsletter, through targeted questionnaires and through data collection for specific project initiatives. Each year that programs are offered, teams look at the success/impact of the prior year's program and identify ways to improve/expand them if applicable. Additionally, CDG CARE received feedback from medical clinics that consent forms and patient materials were needed in translated languages to further diversify the reach of patients. As a result, CDG CARE obtained grant funding and has created several informational videos in Spanish and Portuguese and is currently translating patient resource material documents.

  • With whom is the organization sharing feedback?

    The people we serve, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Our Community is vested in the success of CDG CARE as an organization and with transparent and ongoing communication and operations, our sustainability and mission is able to thrive and grow.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection,

Financials

CDG CARE
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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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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

CDG CARE

Board of directors
as of 3/23/2022
SOURCE: Self-reported by organization
Board co-chair

Karen Morici

CDG CARE


Board co-chair

Kara Berasi

CDG CARE

Term: 2020 - 2022

Christa Doot Thoma

Wendy Putnam

Ashleigh Linthicum

Meral Omurtag

Karen Morici

Karen Oosterhous

Lewis Franklin

Amy Dann

Heather Conneran

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 03/23/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 03/23/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.