17/04/2025
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After 6 years of critical NIH funding, the Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) is now at risk. Our 5-year renewal application has been withdrawn due to a sudden enforcement of a minor administrative oversight without prior notice. This withdrawal threatens HOPE for our CDG community. 💚
The final review meeting is already scheduled for April 22, 2025, just 4 days away!
This directly impacts CDG research... the progress we’ve made, the momentum we’ve worked so hard to build, and the future breakthroughs our community depends on.
We are calling on our community to take 𝐀𝐂𝐓𝐈𝐎𝐍! 📢
⓵ 𝐂𝐀𝐋𝐋 the 4 Co-Chairs of the Rare Disease Congressional Caucus:
•Senator Gus Bilirakis (R-FL) 202-225-5755
•Senator Doris Matsui (D-CA) 202-225-7163
•Senator Roger Wicker (R-MS) 202-224-6253
•Senator Amy Klobuchar (D-MN) 202-224-3244
It does NOT matter where you live, these leaders need to hear from as many CDG community members as possible. ☎️
Here's a sample script you can use, please feel free to personalize it to make it your own:
❝· I (we) am (are) the [parent(s) / clinician / medical professional / rare disease researcher / advocate] of a child with a very rare disease called Congenital Disorders of Glycosylation. I am contacting you as you are a co-chair of the Rare Disease Caucus and my community desperately needs your help.
· Thanks to 6 years of highly successful NIH funding (U54NS115198-07, titled “Frontiers in Congenital Disorders of Glycosylation Consortium” (FCDGC), we now have HOPE for our children. However, a few days ago, it was suddenly administratively withdrawn due to an unannounced enforcement of inconsequential error.
· The 5-year renewal application was originally assigned to NCATS Special Emphasis Panel ZTR1 RD-4 02 with a scheduled meeting mid-February 2025, but it was postponed, even though reviewer critiques were already submitted and proceeded to final review in November 2024. The new meeting was scheduled for April 22, 2025, NEXT WEEK.
· As a co-chair of the Rare Disease Caucus, we need you to act quickly and contact NIH Director Dr. Jay Bhattacharya to request that our application be reinstated and reviewed at the April 22 meeting. If we miss this review opportunity, research will come to a screeching halt and the lives of children, like my (son/daughter) will suffer.❞
⓶ 𝐂𝐎𝐍𝐓𝐀𝐂𝐓 your own representative.
Just click here: https://www.congress.gov/members/find-your-member and enter your address. Your elected official's names and phone numbers will appear. Give them a call and share the same message... we need them to HEAR US loud and clear!
⓷ Please 𝐑𝐄𝐒𝐇𝐀𝐑𝐄 and encourage your family and friends to take action too. Every voice counts!
Let's show up for our CDG community! Please ACT NOW!! 🫸💚🫷
