Reaching for a Cure
2011 NUCDF Annual Conference

July 8-10, 2011

Sheraton Denver Downtown

If you missed this conference, you missed the 

     "BEST CONFERENCE EVER!"

The only UCD event of its kind in the world.
Don't miss this Conference!

We hope you were able to join us in Denver!  For our families who were unable to attend, we missed you and you missed a great conference!  Our new two-day format with workshops, presentations and breakouts received rave reviews from our families in attendance and from our speakers and medical professionals.  We hope you will be able to join us next year!

Our conference was a unique opportunity to meet other UCD families, stay informed, and learn about new advances in research, treatment and management to improve the lives of children and adults with UCD.

Working together, our NUCDF families and community of committed researchers and medical professionals are making a major impact with advances in the understanding of UCDs, accelerating research, and improved outcomes in children and adults with UCD. In the past four years, research for UCDs has increased by 400%!  Let's continue the momentum and end the devastating effects of UCD.


PROGRAM AT A GLANCE (Download Program at a Glance)

Friday July 8

9:00 am - 12:15 pm

Workshops: New Family Orientation, ABCs of UCDs, UCD Diet 101, Extended Family Support Group

Friday July 8

1:00 pm - 5:30 pm

Keynote address and General Session presentations from top researchers and clinical experts in the field of UCDs. Topics include: New Insights in UCD Treatment and Management, New Horizons in UCD, Effects of UCD on Cognition and Behavior, Urea Cycle Nutrition and Immunity, Liver Transplant for UCD, Oxidative Stress in UCD, Dietary Management, How MRI Imaging for UCD May Change Everything, UCD Longitudinal Study - What Are We Learning, UCD Consortium Research Updates, Clinical Trial Updates, Improving Transition from Pediatric to Adult Care and Independence for Children with Special Healthcare Needsric to Adult Care, Feeding Issues and G-tubes in UCD

Friday July 8

6:30 pm - 9:00 pm

Welcome Reception

Saturday July 9

8:00 am - 4:30 pm

Teen Scene for UCD Teens developmental age 12-18 years.

Saturday July 9

8:00 am - 11:45 am

General Session presentations continue (listed above)

Saturday July 9

12:00 pm - 1:15 pm

Luncheon for all participants and children

Saturday July 9

1:30-5:30

Workshops: Accommodating Executive Function & Special Diets in IEPs, UCD Adult Forum, Genetic Testing for UCD, Understanding and Managing Challenging Behaviors, UCD Diet for Life - Proactive & Advanced Strategies, Liver Transplant Issues in ASA, Focus Groups and More

Saturday July 9

7:00 pm - 9:00 pm

Optional Saturday Night Family Social at Lucky Strike Lanes -- We had a blast!

Sunday July 10

8:30 am -10:00 am

Continental Networking Breakfast

HIGHLIGHTS, REVIEWS AND PICS FROM 2011 CONFERENCE

"I know it's been our 5th conference, but somehow this conference really cemented it all.  I know people are always struck by how we deal with things with our daughter's disorder and all, but to be honest NUCDF has really empowered us on this. Roland and I REALLY GET IT! Knowledge is power, and that we've learned from Cindy and NUCDF and the talents of our NUCDF dedicated doctors like Dr Lee..."

                                             ~ Erna & Roland D., Canada

"Michael and I had a great time.  It was great to see old friends and make new.  I was so amazed at how many people remembered me.  The presentations were fantastic.  I really enjoyed the workshops too."

                                            ~ Emily R., Ohio

"I can't believe we've never attended a conference before this year -- how did we ever deal without this information! We thought we knew a lot about our daughter's disorder, but we didn't have a clue compared to what we learned in Denver.  We won't miss another conference! Thank you for all your encouragement and support this past year."

                                            ~ J.D., Michigan

"Thank you for inviting me to participate in the conference again this year. The weekend I spend learning from the families at the NUCDF conference is equal to a year of research in my lab."

                                           ~ O. Shchelochkov, M.D.

"I really do think the conference was a great success, I hope for everyone.  It certainly was for me, I learned a great deal and enjoyed meeting other clinicians and  the families. I do think the talks from my colleagues were excellent, and I very much appreciated their willingness to present and to be involved. 

I loved bowling, it was a highlight for me!"

                                             ~ R. Gallagher, M.D.

"I was so impressed with the conference and delighted to have an opportunity to talk to families about their experiences. I look forward to working with you and the NUCDF as well as our UCD Consortium "

                                            ~ D. Krotoski, Ph.D.
                                              
Special Assistant to the Deputy

                                               Director, Eunice Kennedy Shriver
                                               National Institute of Child Health and Human
                                               Development

 

"Just wanted to say a big "thank you" for putting on such a great conference (as usual), Cindy! We had such a wonderful time seeing the families we've known for a couple years now and meeting LOTS of new families. Bowling was the best...thanks again from Boston!"

                                            ~ Michelle D., Massachusetts

 

"Just completed NUCDF Conference in Denver. It was an awesome weekend packed with invaluable information to help our children. My spirit was lifted by meeting two families with ASA who had never had hyperammonemia thanks to the Newborn Screening that NUCDF fought so hard to have implemented across the country. Many thanks to Cindy, the board, et. al for another phenomenal gathering!"

                                             ~ Joe M., Colorado


                

Old friends meet again at the conference

   
Families and professionals gather to hear speakers presenting latest information on UCD treatment and research

 

Michael Vestal presents NUCDF with $10,000 donation from his family's local fundraiser.

 (left to right: Michael Vestal, Tresa Warner, Dr. Brendan Lee)

 

Families gather to enjoy the Saturday Night Social


Hope to see you next year!

   Our Dream is for a Cure, and we can't

rest until we find it...


HIGHLIGHTS PICS AND REVIEWS FROM 2010

"First, congratulations again on a great meeting. The formal speakers were on target and the 1st breakout group in which I participated was the best ever. I will never stop supporting you all."

                       ~ Stephen Cederbaum, M.D. UCLA Medical Center

"I'd just like to let you know that I enjoyed the conference so very much and I am anticipating next year! I got to know a lot of people. I got some really good information from the conference and I shared it with my doctor. My doctor would like to know more about the HPN-100 trials and the Longitudinal Study. Best Wishes and thanks a lot!"

                       ~ Christine V.

"The conference was fantastic! Thank you again for all that you do.  We are blessed to have you in our lives...we would be no where without you and your commitment to our cause.  We are this advanced because of you and your dedication and knowledge."

                       ~   Amy M.

"What an incredible undertaking. Thanks to you, I also met some wonderful people and learned a lot about kids, courage and coping. What a privilege to be a part of it all."

                       ~ Lani Peterson, Psychologist

"Thanks so much for your hospitality on Saturday. Our last family visit to an NUCDF conference was Philadelphia [1994]. I know I speak on behalf of all of us in attendance back in 1986 or so (one doctor and 4 petrified couples in a tiny room) -- INCREDIBLE! 2010, over 200 attendees, vendor booths, protein free food provided, study groups,  drug manufacturers, and the complete representation of the medical team. Totally impressive to say the least.  Heart breaking of course to see so many families affected.  Most importantly, new hope was found and a realization that it is time to get more active as a family with NUCDF.  We will be forwarding some financial support and renewed memberships asap.  Thanks again for all your hard work, leadership, and keeping the dream alive 23 years later."

                 ~ Peter & Doreen P (One of NUCDF's Founding Families)

 

Lexi Warner &

Cindy Le Mons

Courtney Boutin & Isabella
Erin and Roland
Fun in Childcare
Anthony, Dr. Cederbaum & Amanda Sonntag
Making Friends

 

 

 

M., Citrullinemia, Arizona, USA

"This weekend was a real eye-opener for me. I thought I knew a lot about OTC, but was I wrong! This conference is so valuable, not only with regard to medical research. I will never miss another one. Just being with other parents who have gone through what I have and much more was good for my soul---to talk with others who knew what I was going through....the love and support was incredible." S.R.

Thank You

2011 Conference Sponsors

Platinum

Hyperion Therapeutics

Gold

Orphan Europe

Cytonet

Silver

Vitaflo

Nutricia

Ucyclyd

Montiff, Inc.

Our Appreciation to

Cambrooke Foods

Applied Nutrition