2017 NUCDF Annual Family Conference


July 7-9, 2017

Grand Hyatt Washington

1000 H Street NW

Washington, DC 20001

Registration and reservations open March 27

Hotel reservations with special reduced group rate

Connect - Share - Learn

A ten-thousand mile journey

begins with the first step.

Join us for an empowering, life-changing weekend of knowledge and hope, connecting UCD patients, families, researchers and medical professionals to improve outcomes and accelerate research. Take advantage of this 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.

Our conference hotel, Grand Hyatt Washington, is located in the heart of the US Capitol, steps away from the National Mall, Lincoln Memorial, Washington Monument, Smithsonian Museums, Veteran's Memorial, and all Washington DC has to offer. A special reduced rate has been negotiated for our conference families.

Kids Kamp, our conference childcare, ensures a magical time and a chance for UCD kids to meet and play (they make life-long friends!) while parents attend conference sessions.

Our conference will be held in conjunction with a 2-day scientific meeting of our National Institutes of Health Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). Now in its 13th year, the UCD 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.

Conference activities include the latest research and treatment updates from UCD scientific and medical experts, workshops, breakout sessions, "Ask the Expert" panel discussions, and more!

While in Washington DC for the conference, families have an opportunity to individually participate in clinical research studies, including Dr. Gropman's neuroimaging study at George Washington University. For more details about participating, contact info@nucdf.org or call NUCDF at (626)578-0833.

CONFERENCE PROGRAM AT A GLANCE

FRIDAY, JULY 7, 2017

Afternoon Workshops

1) New Family Orientation: Families new to our conference or newly diagnosed receive an overview of the conference. Meet a mentor family and learn how to get the most benefit from the experience, including valuable context for the educational presentations and tips for interacting with other conference families and medical professionals. Learn how to participate in the UCD International Patient-Reported Registry, and access NUCDF educational and support resources.

2) I didn't know that!: Get a valuable overview of the pillars of UCD management and what you should know about the underlying mechanisms of UCD. Learn the rationales behind managing the disorder that can help improve stability. Get context for understanding clinical and laboratory findings that provide clues to maintaining stability and improving day-to-day management. It's a great session for deepening your level of understanding of UCDs and getting context for the conference presentations.

3) Living Lo-Pro--Designing Meals to Love!: Led by Debra Hook, RD, MPH, UCD metabolic dietician and guru, the workshop introduces new ideas and recipes for creating healthy meals for the UCD diet and transforming your favorite recipes to lo-pro. Learn how use new lo-protein products and how to make lo-pro substitutions using "regular foods" the whole family can enjoy. The interactive workshop helps newly diagnosed families and everyone wanting a new approach to lo-pro to increase their knowledge of practical strategies for UCD dietary management using real-life examples, easy-to-access products, and new tools.

Welcome Reception

6:30pm - 9:00 pm: For all Patients, Families, Kids and Medical Professionals. Everyone has an opportunity to connect, network and meet their favorite UCD expert!

SATURDAY, JULY 9, 2017

Conference General Session, Luncheon and Breakouts  8:00am - 5:00pm

Our Keynote Address and General Session Presentations from top researchers and clinical experts in the field of UCD will focus on important treatment and management issues, new research, and include topics submitted by our UCD families. The General Session will be followed by panel/breakout discussions moderated by clinical experts in UCD. Invited speakers, panelists and breakout moderators include distinguished clinical experts, members of the NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium, as well as UCD adults and families.

SUNDAY, JULY 9, 2017

8:30am - 10am: Continental Breakfast Get Together.

10:00am:  End of Family Conference. Enjoy Washington, DC!

SAMPLE OF INVITED SPEAKERS AND TOPICS

Keynote Speaker, Brendan Lee, MD, PhD, Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman of the Department of Molecular and Human Genetics, Baylor College of Medicine, Houston TX.

Andrea Gropman, MD, Child Neurologist and Clinical Geneticist, Professor of Neurology and Director of the Neurogenetics Program at Children’s National Health System, Washington DC.

Sandesh Nagamani, MBBS, MD, Assistant Professor and Director of the Clinical Research Division, Molecular and Human Genetics, Baylor College of Medicine, Houston TX.

Emily Rothbaum-Perito, MD, MAS, Assistant Professor,
Department of Pediatrics, Division of Gastroenterology,
Hepatology and Nutrition, Department of Epidemiology and Biostatistics, University of California, San Francisco.

Lindsay Burrage, MD, PhD, Assistant Professor, Department of Molecular and Human Genetics, Baylor College of Medicine, Houston TX.

Debra Hook, RD, MPH, Metabolic Dietician, UC Davis, Children's Hospital Los Angeles, University of Southern California.

Susan Berry, MD, Professor & Division Director, Genetics & Metabolism, Department of Pediatrics, University of Minnesota.

Renata Gallagher, MD, PhD, Assistant Professor, Clinical Pediatrics, Institute for Human Genetics, University of California San Francisco.

Gregory Enns, MD, Professor of Pediatrics (Genetics), Lucile Salter Packard Children's Hospital, Stanford University.

Maya T. Gerstein, MPH, Research Scientist, Department of Health Policy & Management, Milken Institute School of Public Health, The George Washington University

Nicolas Ah-Mew, MD, Assistant Professor, Pediatrics, The George Washington University, Children's Research Institute, Children's National Health System.

Gerald Berry, MD, Director, Metabolism Program, Professor of Pediatrics, Boston Children's Hospital

Irma Payan, MSN, CRNP, PPCNP-BC, Pediatric Nurse Practitioner, Division of Human Genetics and Metabolic Diseases Program, Children's Hospital of Philadelphia.

Shawn McCandless, MD, Division Chief, Pediatric Genetics, Rainbow Babies and Children's Hospital, Cleveland.

Janice Bartos, BSN, RN, Research Study Coordinator, National Urea Cycle Disorders Foundation, Pasadena CA

Topics include:

  • How to anticipate and prevent hyperammonemic crisis.
  • Optimizing and manipulating the UCD diet - why is it the key to stability? Learn how some foods may sabotage stability, behavior, brain function and well-being.
  • Understanding the effects of UCD on learning, mood, behavior and performance. What can we do about it?
  • Improving long-term health and outcomes: the latest treatment and management insights.
  • New research comparing outcomes for liver transplantation versus standard of care.
  • Promising UCD treatment advances & clinical research studies.
  • Translating new frontiers of knowledge to improving treatment - the microbiome, metabolomics, and the gut-brain connection.
  • CureUCD Center for Preclinical Therapeutic Discovery: accelerating promising breakthroughs in gene editing. Our someday is now!
  • Communicating effectively with your medical team in clinic and in the hospital.
  • Practical tools for improving performance and managing difficult behavior.
  • What you need to know about participating in new clinical trials.
  • Staying on top of long-term health implications for UCD patients and carriers across the age spectrum.
  • Transitioning from pediatric to adult care.
  • Family Networking, Breakouts by Topic and Disorder, Ask the Expert, Adults with UCD and more.

STAY INFORMED!

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. Let's keep research momentum going. 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 THE 2015 CONFERENCE

We are very excited and so happy that we were able to meet you all and are so appreciate of all of the information we learned! Thank you all!! ~ RG

I wanted to send a quick but huge THANK YOU for all you do, but especially for putting on such an amazing conference. Our first conference experience was nothing short of amazing and I am already looking forward to next years! Thanks again for your dedication to our families! We would be lost without you. If there is ever anything I can do to help, please do not hesitate to let us know. ~ SM

I just wanted to say Thank You! My husband and I learned more in 2 days than we had in 2 years! ~ EG


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. ~


Thanks so much the fantastic National UCD Conference in Cleveland, OH. It was such a fantastic gathering of families and health care professionals! ~


 

 

Urea Cycle Disorder Family

No matter what language you speak, Together, we can conquer UCD!

Juntos, somos una familia!
Ensemble, nous pouvons vaincre UCD

Gemeinsam können wir erobern UCD

Μαζί, μπορούμε να κατακτήσουμε UCD

Insieme, possiamo conquistare UCD

Вместе мы можем победить UCD

Tillsammans kan vi erövra UCD

Saman getum við sigra UCD

UCD معا، يمكننا قهر

一緒に、我々はUCDを征服することができます

با هم، ما می توانیم UCD تسخیر


Conference Quick Links

Conference Flyer

Conference Registration - Opens March 27

Hotel reservations Group Rate - Opens March 27

Final Agenda

Contact us:

Email: CureUCD {insert the @ sign}nucdf.org

To reduce spam, we have disguised the email address. Don't forget to insert the @ sign and remove the brackets.

Phone: (626)578-0833


Comments from our UCD community:

"I'm so excited to be going to my 1st conference!"~JA

"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

 

2013 NUCDF Conference 2014 NUCDF Conference 2015 NUCDF Conference Cycle Challenge Rare and Precious NUCDF Hoops for Hope Other