2019 NUCDF Family Conference Highlights

2019 NUCDF Annual Family and Scientific Conference:

Hope Happens Here

July 19-21, 2019

Westin Georgetown Hotel
2350 M Street NW
Washington DC 2003

Connecting Families with Knowledge and Hope

In the last 20 years, over than 3500 families have attended an NUCDF Conference!

We had an empowering, life-changing weekend! The NUCDF Family Conference connected UCD patients, families, researchers and medical professionals to improve outcomes and accelerate research.

Each year, the NUCDF Annual Family Conference is a unique opportunity to learn about advances in research, new treatments, and cutting-edge management insights that can help improve the lives of children and adults with UCD. Families and medical professionals are partners in our research roadmap to improve the future for all those affected by UCDs. UCD patients and families are empowered with tips and tricks that make a difference in dealing with UCD.

Our 2019 Family Conference was held in conjunction with the annual scientific meeting of our National Institutes of Health Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). Over three days, the Family Conference activities included the General Session with the latest research and treatment updates from preeminent UCD scientific and medical experts, focus groups, "Ask the Expert" panel discussions, workshops and breakout sessions on UCD treatment and management, and liver transplant for UCD.

The program included updates from research studies conducted by our NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). Now in it's 15th year, the UCD Research Consortium is an international network of research and clinical "centers of excellence" that conducts pioneering research to improve the knowledge of UCDs, clinical trials for new treatments, and ongoing natural history studies of UCD patients. NUCDF is a founding partner in the UCDC in developing clinical trials for new treatments and research studies to advance the understanding of UCD.

UCD patients and families had the the opportunity to participate in an important research study right at the conference using a non-invasive neuroimaging technique to test new neurocognitive evaluation tools that will be used in upcoming studies.

Conference Workshops, General Session & Breakouts Topics included:

• Optimizing management and drug treatment options
• New research comparing liver transplant to standard management
• Updates on how UCD affects learning, mood and behavior
• New and upcoming clinical trials
• Predicting risk of liver disease in UCD
• Improving long-term health and outcomes - new treatment and management insights.
• Presentations by UCD patients including life strategies for living with UCD, and life after transplant
• Patient-Powered Research updates
• Managing the UCD diet - participants learned what can be be sabotaging metabolic stability, mood & behavior, brain function and well-being
• New frontiers - mRNA gene correction, the microbiome, metabolomics and the gut-brain connection
• CureUCD Center for Preclinical Therapeutic Discovery - accelerating promising breakthroughs

STAY INFORMED with credible information!

If you aren't able to attend the conference, you'll want to stay up to date on the latest developments in our UCD world. If you are not already a member of NUCDF, please accept this personal invitation to join us, stay informed and be part of our international UCD community! Membership is free, but the benefits are priceless. Together, we WILL find a way to end the devastating effects of UCD!

Our Dream is a Cure, and we can't rest until we find it...

Comments from our UCD community:

"NUCDF really is the driving force behind UCD research and support and education of families and physicians alike. NUCDF has directly improved the lives of families by providing them with credible guidance and access to the most current information." ~ Brendan Lee, MD PhD, Chair, Div. Molecular and Human Genetics, Baylor College of Medicine

"NUCDF provides services and support to patients and families with UCD that no other organization, no matter how well funded can. NUCDF is an essential component in the care of patients and has come to be relied upon by both affected families and the professionals caring for them." ~ Stephen Cederbaum, MD, Emeritus, UCLA Dept. of Medical Genetics

"It's always amazing. We go to the conference every year we can, and we always leave with more information that helps us care for our son. Because of the research we learn about at the conference, we have hope for his future." ~BR

"We left exhausted but hopeful and excited to put what we've learned to use right away. We plan to stay in touch with the other families we met and see them again at next year's conference. Thanks to NUCDF for being there for all of us!" ~ED

"NUCDF gave us more information than we ever got from our doctor. We were confused by all the crazy stuff we read on the internet and Facebook and suspected the sources were pretty scary. NUCDF helped us sort out the facts so we could actually help our daughter. ~NS

From Facebook:
I'm so happy we finally met in person! We learned a great deal, and the conference helps combat the feelings of isolation and fear that come with a UCD. Everyone we met was so welcoming, compassionate and genuine.

The NUCDF conference we attended in Cleveland was just awesome. These doctors are the best in the world when it comes to urea cycle disorders and I feel so thankful to have heard what they have to say. We have a lot to think about after this trip in terms of how we want our son's future to be. It was so nice meeting families and especially others moms who understand what it's like to have a child with this disorder and the stress that it brings. They were so comforting when I was an emotional wreck. I feel like they have been my friends for a long time already :-) a big thank you for putting this together and taking the time to talk to me about my son, and for being such an advocate for our kids!!!!! We are beyond blessed to have this help.