Our 2015 conference moved to the Midwest/Great Lakes region. Over 150 families and medical professionals came together in Cleveland, Ohio for a life-changing experience. Together, they took advantage of this unique opportunity to meet 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 was 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 10th year, the UCD Consortium is an international network of research and clinical "centers of excellence" that conducts pioneering investigations to improve the knowledge of UCDs, as well as clinical trials for new treatments and a natural history study of UCD patients. The General Session of the Family conference on Saturday, July 11, included presentations and the latest research updates from Consortium scientific and medical experts.
Our conference hotel, Cleveland Marriott Downtown at Key Center was located in the heart of Cleveland's business district within walking distance of the Rock and Roll Hall of Fame, fun-for-kids Great Lakes Science Center, and offered breathtaking views of Lake Erie and the city skyline.
The kids had a magical time in our conference childcare - Kids Kamp. They had a great time in Kamp activities, met other UCD children and made some life-long friends. The kids didn't want to leave at the end of the day!
CONFERENCE PROGRAM AT A GLANCE
FRIDAY, JULY 10, 2015
New Family Orientation: Families new to our conference or newly diagnosed with a UCD received an overview of the conference and learned how to get the most benefit from the experience, including valuable context for the educational presentations and tips for interacting with other families and the medical professionals at the conference. An overview of NUCDF was featured, including how to participate in the UCD International Patient-Reported Registry, and access NUCDF educational and support resources. The UCD International Patient-Reported Registry enables UCD families and patients to self-report their experiences with UCD and contribute information that can assist researchers in improving the knowledge of UCD and developing new treatments.
I Never Knew That!: UCD adults and families received a valuable overview of the pillars of UCD management and what they should know about the underlying mechanisms that can help improve stability. The workshop provided context for understanding clinical and laboratory findings that provide clues to maintaining stability and improving day-to-day management. It was a great session for deepening your level of understanding getting context for the conference presentations.
Living Lo-Pro--Designing Meals to Love!: Led by Debra Hook, RD, MPH, UCD metabolic dietician and guru, the workshop introduced new ideas and recipes for creating healthy taste treats for the UCD diet and transforming your favorite recipes to lo-pro. Participants learned how to get more out of living lo-pro by utilizing new lo-protein products and how to make lo-pro substitutions using "regular foods" the whole family can enjoy. The interactive workshop helped newly diagnosed families and everyone wanting a new approach to lo-pro to increase their knowledge of practical strategies for dietary management of UCD using real-life examples, easy-to-access products, and new tools.
6:30pm - 9:00 pm: For all Patients, Families, Kids and Medical Professionals. Everyone had an opportunity meet their favorite UCD expert!
SATURDAY, JULY 11, 2015
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 focused on important treatment and management issues and new research, and included topics submitted by our UCD families. The General Session was followed by panel/breakout discussions moderated by clinical experts in UCD. Conference speakers included:
Keynote Speaker, Brendan Lee, MD, PhD, Robert and Janice McNair Endowed Chair in Molecular and Human Genetics and Professor and Chairman of the Department of Molecular and Human Genetics at 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 Medical Center, 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, Children's Hospital Los Angeles, University of Southern California.
Donna White, RN, PhD, CS, CADAC, certified educator and therapist in Compassion Fatigue.
- Anticipation & preventing hyperammonemic crisis
- Optimizing and manipulating the UCD diet - why is it the key to stability? Is there a connection between the gut and the brain?
- How UCD affects learning, mood, behavior and performance - what you need to know.
- Improving long-term health and outcomes - updates on the newest treatments and management insights.
- New UCD investigations, advances and clinical research studies - what are we learning and what does the future hold?
- Enzyme Replacement Therapy for Arginase Deficiency.
- Liver Issues and Transplant Options for UCD - what does new data tell us out outcomes after transplant, and what is the liver transplant process and "life after transplant" like.
- Clinical Trial for new treatment for ASA
- 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 clinical trials.
- Coping with Caregiver Stress: The Effect of Compassion Stress and Fatigue - What's in your Tool Kit for Self Care?
- Breakout sessions: Adults with UCD (packed to capacity!), Improving Daily Management and Stability, Liver Transplant for UCD, New Clinical Trial for ASA
SUNDAY, JULY 12, 2015
8:30am - 10am: Continental Breakfast Get Together
10:00am: End of Family Conference. Families left for home or enjoyed Cleveland on their own. Several stayed for a Longitudinal Study visit at the Cleveland Urea Cycle Disorders Consortium clinical and research site.
If you weren'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
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! ~
COMMENTS FROM THE 2014 CONFERENCE
Some conference families gather for a pic
"The conference was so full of information I will use daily to help my daughter live life to the fullest. I learned so much from the presenters, doctors, and other families and individuals living with UCD. Thank you for empowering me with knowledge and filling me with hope."
"We are so grateful to you for this convention of minds. So much great info! We are overwhelmed, but it has stimulated so many new thoughts about how we can improve our daughter's care. We met people that really care and know how we feel. NUCDF has given us hope. We got information we can trust, and met people who want to help us."
"We thank God every day that despite the fact that our daughter was born with this disease, we have this incredible Foundation behind us. Your support has been incomparable."
"My son got so involved and was blown away by the conference and insists we to to every one from now on. I was so humbled and astonished by the entire gathering. I haven't been to a conference since the 90s, and I cannot believe the progress. It is hard for me to wrap my head around!"
"It was a great conference. I gained so much in hearing about all the advances and what is happening nationwide. If there is any way I can help out on an ongoing basis, please let me know. I am going to try and get the word out to San Diego families who may need some support. Looking forward to next year."
"I had an absolutely fabulous time at the convention! Met so many people and learned so much! NUCDF is like family."
"I want to give a special THANK YOU for putting on a spectacular conference and for all you do for us...without you so many of us would not be here today, you have touched so many lives and for that I am forever grateful."
"The conference was amazing! I really enjoyed getting to meet so many different people. It was truly inspirational. I learned so much more about UCD - I thought I knew everything! We're looking forward to next year."
REVIEWS, COMMENTS FOR THE 2013 VIRTUAL ONLINE CONFERENCE
So pleased to be able to join in this year through the virtual conference. The Florida 2008 conference was such a long time ago, but we loved being there. Thanks for making it possible to join in again this year from the UK xxx"
"Excellent job!! ....amazing amount of information, great interaction, and I think you've touched many families today that could not have made the trip!! We watched the whole thing. ...Nice job."
"Great conference! Lots of info to digest and discuss with my doctors! Thank you to NUCDF and all of the presenters!"
"I just wanted to tell you that I thoroughly enjoyed this years virtual conference and appreciate all the hard work and dedication it took to make it all possible. It was truly informative and I gained more knowledge after listening to each presentation. Our son (arginase defeciency) spent weeks in hospital this winter due to high ammonia levels and I was really looking forward to the conference. I just wanted to send this email to let you know I really appreciated today... thinking of you all and all our urea cycle families!"
"Congratulations on the virtual conference. It was amazing to see the progress that has been made since I first started attending!"
"My husband and I have never attended a conference before, but we were completely surprised (and a bit overwhelmed) with the information that was provided. We learned an incredible amount that we think will help us in caring for our daughter. She has had some bouts in the hospital recently that our doctors couldn't figure out, but the reasons were made clear to us by the information in Dr. Lee's presentation! Thank you for all your efforts to give our families access to this conference. We hope to be able to attend in person next year."
"NUCDF is always on the cutting edge - great idea and great conference!"