2015 NUCDF Family Conference Highlights

2015 NUCDF Annual Family Conference

July 10-12, 2015
Cleveland Marriott Downtown at Key Center
127 Public Square
Cleveland, Ohio 44114
Hope you didn't miss this conference!

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). 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!

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

Comments from our UCD community:

"So glad the conference will be in Cleveland, only 2 hours from us and where our geneticist is."

"Yea! I can drive there. I can't wait to hear all the latest!"

"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.