|
|
|
|
Community
Newsletter · November 2026
Moving forward,
together
|
|
This fall, our community rode for research, spread the word about ammonia testing, and gave NUCDF a new home base in
Washington, DC. Next up: a lecture from one of the field's leading researchers and a runner taking the UCD story to all seven continents.
Here's what's happening and how you can be part of it.
|
In this issue
• Le Mons Lecture with Dr. Brendan Lee – Nov 10
• Klara's Great World Race – Nov 15–21
• Cure the Cycle 2026 recap
• Check Ammonia campaign
• We've moved to Washington, DC
|
|
|
Upcoming
· Free online lecture
Cynthia
Le Mons Memorial Lecture Series on Metabolism
|
|
|
“Flux from
Ammonia to Urea: Highway of Discovery to Treatment”
Join Brendan Lee, MD, PhD, as he traces the path from discovery to treatment in urea cycle
disorders. Dr. Lee is the Robert and Janice McNair Endowed Chair and Professor and Chairman of the Department of Molecular and Human Genetics at
Baylor College of Medicine.
The lecture series honors Cindy Le Mons and her lifelong commitment to the UCD community. It is presented by the
American Institute for Neuro-Integrative Development (AIND), Baylor College of Medicine and NUCDF.
|
|
|
|
|
|
Cheer
her on · Nov 15–21
Klara's
Great World Race: 7 marathons, 7 continents, 7 days
|
|
|
From November 15 to 21, Klara Dickinson, an NUCDF board member, will run seven marathons on seven continents in
seven days, all to raise awareness and funds for NUCDF. Every leg of her journey carries a piece of the UCD story, from what UCDs are in Antarctica to
why the finish is only the beginning in Miami. Read about each leg of Klara’s race →
Klara has raised $11,000 toward her $77,700 goal. Help make every mile matter.
|
|
|
|
|
|
Recap
· October 10, 2026
Thank you
for riding with us at Cure the Cycle 2026
|
|
|
On October 10, riders, walkers and supporters came together at 8 locations across the country for the 12th annual
Cure the Cycle Challenge. Thank you to every participant, team captain, donor and sponsor who showed up for the UCD community.
|
|
|
Thanks to 362 donors, proceeds support the Cindy Le Mons Fellowship Grant, which funds innovative research and emerging
investigators working toward better treatments and outcomes for people living with UCDs.
|
|
|
|
|
|
Awareness
· Check Ammonia
When
symptoms don't make sense, Check Ammonia
|
|
|
High blood ammonia can cause neurological, behavioral, digestive or unexplained symptoms at any age, and it is often
mistaken for something else. A prompt, properly collected plasma ammonia test can catch it early and protect the brain. Thank you to everyone who
shared the Check Ammonia message this October.
Throughout October, we shared stories from many families about how checking ammonia, or not checking it in time,
shaped their lives. Thank you to every family who shared their story with our community. Your voices help others recognize the signs and ask for a
test. Learn more
and read their stories →
|
1. Identify
Know the signs of high ammonia. |
|
2. Check
Test plasma ammonia promptly. |
|
3. Call
Contact a metabolic geneticist. |
|
|
|
The Check Ammonia campaign belongs to everyone. Families, clinicians, hospitals, schools, advocacy groups and
industry are all invited to partner with us by using and sharing the materials.
The need for awareness doesn't end with October. Download pocket cards, symptom guides, testing guidance and shareable
graphics at checkammonia.com, and pass them along to your pediatrician, emergency department or school nurse.
|
|
|
|
|
|
NUCDF
news
We've
moved to Washington, DC
|
|
NUCDF now rents office space at the RARE Community Hub, a service of the RARE Foundation (formerly EveryLife
Foundation), just off K Street near Capitol Hill. We share the space with organizations like Global Genes, the National MPS Society, the COPD
Foundation and the Undiagnosed Diseases Network Foundation.
“The
RARE Community Hub gives NUCDF an affordable home base in Washington, close to where decisions about rare disease research, treatment, and
reimbursement are made. Just as important, it puts us side by side with other rare disease organizations, so we can work together more closely on
behalf of patients.”
—
Tresa Warner, Executive Director
|
Our new mailing address
National Urea Cycle Disorders Foundation
1012 14th Street NW, Suite
500
Washington, DC 20005
|
|
Mailing a gift? Please use the new address.
Used the old address? No problem. We're forwarding mail.
Giving online? Nothing changes at nucdf.org/donate.
|
|
Our phone number and email stay the same: (626) 578-0833 and cureucd@nucdf.org.
|
|
Thank you for being part of the NUCDF community.
Your support makes our work for families affected by urea cycle disorders possible.
|
|
|
|
We
know urea cycle disorders. We live to conquer them.
Facebook ·
Instagram ·
LinkedIn ·
YouTube
National Urea Cycle Disorders Foundation
1012 14th Street NW, Suite 500, Washington, DC 20005
(626) 578-0833
· cureucd@nucdf.org · nucdf.org
You are receiving this email because you opted in to NUCDF updates.
Copyright © 2026 National Urea Cycle Disorders Foundation. All rights reserved.
|