Welcome to the CDG CARE Family Support Network! |
One Mission. One Community. One Voice. |
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Welcome New Members from Canada, Germany, Romania, the United Kingdom, and the USA!
The CDG Family Support Network (FSN) has been created to help families connect and stand united to advance resources and research for ALL CDGs. We are excited to share that we have new members who have recently joined from all over the globe! Whether you are wanting to connect with families with the same CDG Type, within a geographical region, or with children of a certain age, it is our mission to ensure that the FSN will be the most extensive group of CDG families ready to assist each other.
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September is Newborn Screening Awareness Month!
Imagine if you had learned of your family member's CDG diagnosis, EARLY, ACCURATELY, and FOR FREE on your child's Newborn Screening Test... how would that have changed those early weeks, months, years you spent searching for answers and a diagnosis?
Well, our FCDGC research teams are currently working on a project to advance newborn screening for CDGs! We know that establishing early diagnosis is important to enable early monitoring, treatments, and provide opportunities to start targeted therapies which could potentially halt the progression of the disease and improve clinical outcomes.
If you have a few minutes and would like to join this effort, run through the questions below to find out if you are eligible and if you are, we encourage you to contact the team at CHOP before the deadline of December 31, 2022!
The participation process is easy. Parents/Caregivers will be guided through filling out the required forms to have their child’s newborn screening blood spot cards sent in for research analysis. No new blood collection is necessary.
SO, the important question is - are you eligible?
- Was your child born in the USA? If yes, continue...
- Is your child diagnosed with an n-glycosylation CDG type? (PMM2, MPI, PGM1, SLC35A2, ATP6AP1, MOGS, all of the ALG CDGs, etc) If yes, continue...
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Was your child born in CA, NJ or NY? If yes, you ARE eligible, please contact the research team at Hem@chop.edu or call 215-590-1177
- IF your child was born in any other US State - is your child <2 yrs old? If yes, you ARE eligible! Please contact the research team above
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If you have any questions about eligibility please email the research team above, or CDG CARE at info@cdgcare.org
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Epalrestat Clinical Trial for PMM2-CDG Patients Begins in October!
After many months of working through the design, regulatory requirements, and development of this highly anticipated Clinical Trial, Maggie's Pearl has just announced that the first patient dose of Epalrestat is scheduled for mid-October!
All 40 patients who participate in this clinical trial will be seen at the Mayo Clinic in Rochester, MN for their initial and follow-up appointments. The Mayo Clinic will also be managing all recruitment, travel reimbursement and coordination of study visit dates. It is anticipated that all initial appointments for study participates will be completed by mid-January 2023.
To learn more about this trial, or to schedule your appointment, please contact Jessica Ward at Ward.Jessica1@mayo.edu or call 507-266-9619.
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Patient Driven CDG Research Initiatives are Underway!
As part of CDG CARE’s effort to advance and diversify patient-led research in the field of CDGs, we now offer Fiscal Sponsorship Opportunities for families who desire to pursue well-defined and collaborative research projects.
We are delighted to share that in just a few months' time, over $270,000 has been raised to support global research projects for the following CDG types: ALG8-CDG, GMPPA-CDG, PIGA-CDG, PIGN-CDG, and PIGS-CDG!
To learn more about the projects that are currently underway, simply click on the links below:
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Glial Research in ALG8-CDG |
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PIGA-CDG Drug
Repurposing Project
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PIGN-CDG Drug
Repurposing Project
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PIGS-CDG Drug
Repurposing Project
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How do I connect with families?
Use the GLOBAL CDG MAP to stay connected and meet families in your region, or with your CDG type!
The map is uploaded on a monthly basis, and we encourage our members to visit and share it with new CDG families. Just zoom in on your country, province/state or area and see all of the new families who have registered near you. We over 13,500 views on our Global Map!
Now is the perfect time to reach out and meet new families... to connect, simply send us an email at info@cdgcare.org and we will put you in touch with members in your region!
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