CDG CARE

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.