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I'm passing along this email from the founder of the CURED (Campaign Urging Research for Eosinophilic Disease) Foundation:

"CURED Foundation Appeals to Our Community: Stand Together to Secure the Future of Rare Disease Research!

NIH pulled funding for eosinophilic diseases research

Dear CURED Families, Professionals, and Advocates,

We are reaching out today with an urgent plea for action. In an alarming and unforeseen move, the National Institutes of Health (NIH) has withdrawn the 5-year renewal application for the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), the only federally funded research and clinical care network for EGID patients in the United States.

This withdrawal was not due to scientific merit but rather a minor administrative item that had not previously been addressed.

Regrettably, the CEGIR is not alone. The Frontiers in Congenital Disorders of Glycosylation Consortium (FCDGC) has suffered the same fate, further jeopardizing progress in rare disease research.

Thousands of rare disease families are now at risk. The implications are staggering:

Clinical studies and trials face indefinite delays or cancellations.

Families may lose access to EGID specialists at NIH-supported centers.

Pioneering diagnostic and therapeutic research risks grinding to a halt.

The centralized infrastructure for EGID studies in the U.S. is in danger of collapse.

Without intervention, this could be the beginning of widespread setbacks for rare disease programs.

NIH contacts have informed us that all appeals have been exhausted, with this decision being imposed “from the top down.” If we fail to act now, a dangerous national precedent could take hold, threatening rare disease research everywhere.

We need your help urgently: Call all four of the Rare Disease Congressional Caucus Co-Chairs… Tell them we need the CEGIR and FCDGC applications reinstated and reviewed at the April 22, 2025, NIH Final Scientific Review meeting

· Rep. Gus Bilirakis (R-FL): 202-225-5755

· Rep. Doris Matsui (D-CA): 202-225-7163

· Sen. Roger Wicker (R-MS): 202-224-6253

· Sen. Amy Klobuchar (D-MN): 202-224-3244

Contact your member of Congress… Find them here

Ask them to urge NIH Director Dr. Jay Bhattacharya to reinstate the application before April 22nd.

Share this Alert Widely… Reshare on social media, forward this newsletter, and activate your personal and professional networks. We need loud, fast, unified support.

Families & Professionals: Are You Willing to Speak with the Media?

We are gathering personal stories and professional perspectives for national coverage. If you have:

· Participated in a CEGIR trial or study

· Traveled to a CEGIR site between 2015–2024

· Worked closely to provide care and research support to families

Please email us at: Ellyn or Shay

This week is critical. Please don’t wait.

We know this is difficult news to process. But we are NOT giving up. We are fighting not just for CEGIR, but for the future of rare disease research across the country.

Please stand with us. The clock is ticking.

In unity and urgency,

Ellyn Kodroff President and Founder, CURED On behalf of CURED & our rare disease partners at FCDGC"

#eosinophilic gastritis #eosinophilic disorders #eosinophilic disease #rare disease #egid #chronic illness #chronically ill #rare disorders #eog #eoe #eosinophilic esophagitis #eosinophilic colitis #eosinophilic gastroenteritis #eosinophilic #cured foundation #cegir #nih #hypereosinophilic syndrome

Amazon has a feature now that lets you choose a charity to have them donate to when you make a purchase at no extra cost to you! I’m using it to support the CURED (Campaign Urging Research for Eosinophilic Disease) Foundation

#eosinophilic disorders #eosinophilic disease #campaign urging research for eosinophilic diseases #CURED Foundation #eosinophilic gastritis #eosinophilic esophagitis #eosinophilic gastroenteritis #eosinophil #eosinophilic enteritis #eosinophilic colitis #eosinophilic gastrointestinal disease #eosinophilic gastrointestinal disorders #rare disease #rare disorders #immune system #chronic illness

I don’t just make memes lol

#CURED Foundation #campaign urging research for eosinophilic diseases #eosinophilic gastritis #eosinophilic disorders #eosinophilic disease #eosinophil #eosinophilic esophagitis #rare disease #rare disorders #chronic illness

I painted a pumpkin to put on my front porch and I just gotta say why tf is teal such a difficult color to mix

https://www.foodallergy.org/education-awareness/teal-pumpkin-project

https://curedfoundation.org/

#teal pumpkin project #CURED Foundation #eosinophilic disorders #eosinophilic gastritis #eosinophilic esophagitis #eosinophilic disease #campaign urging research for eosinophilic diseases #food allergies #food intolerances #food #Halloween #eoe #pumpkin

For my birthday this year, I'm asking for donations to CURED Nfp - Campaign Urging Research for Eosinophilic Diseases. I've chosen this nonprofit because...

Please check out this fundraiser that was set up and shared on Facebook to raise money and awareness for the CURED Foundation, and help spread the word!

#eosinophilic gastritis #eosinophilic disorders #cured foundation #rare disease #eosinophil #campaign urging research for eosinophilic diseases

#CURED Foundation #non-profit #nonprofit #not for profit

CURED Foundation

In January 2003, our daughter, Jori, was diagnosed with Eosinophilic Disease. It took a long time to make that diagnosis. Her red blood levels showed that she was malnourished. She had a lot of stomach aches and nausea. The doctors believed she had Celiac disease. She eventually had an endoscope and when they scoped her they found her stomach filled with inflammation, polyps and severe bleeding.

We had no idea where to turn to. So little was, and still is, known about the illness that we spent hundreds of hours researching where to go and what to do. We have found some solace through support groups and our journey has brought some wonderful people into our lives.

The one thing we could not grasp was that there is no cure for Eosinophilic disease. And there is little treatment. This has been the hardest part of all– feeling helpless and watching our daughter suffer.

>And so began our journey of starting a foundation. With energy and determination that we did not know we had, we elicited the help of family and friends. Within a year, CURED was founded. As it’s name suggests, Campaign Urging Research for Eosinophilic Disease we are committed to finding a CURE for Eosinophilic disease.

We are still amazed at the wonderful response we have gotten. We began CURED at our kitchen table in a northwest suburb of Chicago. We now operate fundraisers across the country. And we are still growing thanks to so many people who have shown how much they truly care.

Thank you for your support.

Ellyn & Fred Kodroff

#CURED Foundation #non-profit #nonprofit #not for profit