We hope you were able to come and be part of this unique opportunity to meet other UCD families and stay informed! Patients, families and medical professionals heard about new advances in research, new treatments in the pipeline, and management insights that 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 -- advancing the under-standing of UCDs, accelerating research, and improving outcomes in children and adults with UCD.  Research for UCDs has increased by over 400% in the last four years! Let's keep the momentum going and find a way to end the devastating effects of UCD.

This year's conference was held in conjunction with a scientific meeting of the Urea Cycle Disorders Research Consortium. UCD experts from the US and abroad attended both the Research Consortium meeting and the NUCDF Conference. It was a crucial opportunity to hear about the latest research in UCDs.

The Vestal Family presented NUCDF President Tresa Warner with a check for $20,000 for NUCDF's Brain Project research from the proceeds of their fundraiser. Tresa thanked the Warners for their generous donation on behalf of all our UCD families. The Vestals announced that they are taking on the challenge of raising twice the amount next year!  Their contribution makes a significant impact in supporting new research projects to improve the understanding of the effects of ASA and other urea cycle disorders on the brain.  Thank you to the Vestals for their continuing commitment to help NUCDF accelerate research to improve the quality of life for all those affected with UCD.

We had several special awards this year to honor amazing individuals for their commitment to our cause.  Toni Martinez was presented with our first Angel Award for her incredible dedication and volunteer service to our families and NUCDF.  Jon Oliphint received our Hero Award for being a pioneer as a participant in critical research for ASA.  Oleg Schchelockov, MD and Sandesh Nagamani, MD, our NUCDF Fellowship Awardees in 2010 and 2011, received our Making a Difference Award for their outstanding contributions to science through their discovery of the role of nitric oxide in ASA deficiency and its impact on general medicine.

On Monday, July 16, advocates from our families joined Deb Hook, RD and Cindy Le Mons, NUCDF Executive Director, for visits to congressional representatives on Capitol Hill.  The goal was to raise awareness and ask for their support for the Medical Foods Equity Act and leadership in assuring that coverage for medical foods and formulas will be mandated in the new healthcare legislation.  The visits were extremely successful -- Congressman Keith Ellison of Minnesota, Senator Amy Klobuchar of Minnesota and Congressman Joe Baca of San Bernardino all signed on! We owe a debt of gratitude to Deb Hook for all her hard work putting together the information packets, scheduling and coordinating the visits, and briefing our families.  Thank you, Deb!

PROGRAM AT A GLANCE

HIGHLIGHTS, REVIEWS AND PICS FROM 2012 CONFERENCE

"Thanks for inviting our NIH research department to the NUCDF family conference. It is always a pleasure to meet with families, learn from their experiences, and remind myself why I am so committed to to this resilient group of families. After presenting some of our animal findings with the OTC and citrullinemia mouse models, I wound up talking to a number of families that may be interested in coming to NIH. Thank you for posting the research studies on the NUCDF website. I hope Advocacy Day is successful in raising awareness. I am looking forward to the meeting next year and presenting some more of our findings."

                                          ~ Peter McGuire, MD

                                             UCD Nutrition & Immunity Study

                                             National Institutes of Health

"I just wanted you to know that it was amazing...you coordinated doctors and researchers from all over the world.  All of the planning and organization that your team put forth was so obvious to everyone there. It was a top-notch conference..."

                                           ~ Mindy, Maryland

"Brent and I wanted to write you a little note and say thank you for creating a conference with such a wealth of professional and personal information.  The people we met were wonderfully caring and willing to help if they could. The level of commitment shown by the doctors, researchers and parents gave us the extra boost we needed to start asking questions once again and seeking answers to questions about our son's quality of treatment and overall health.  It was so encouraging to see that people do care and are working towards finding a cure for all UCDs that is manageable for families. Once again we appreciate all that you have done for us and our family.

                                             ~Brent & Amanda, Canada

"My daughter and I were both so grateful to be able to participate in this conference.  It was a wonderful experience -- and a first rate conference.  We gained so many valuable insights that we are both still digesting what we heard. I can only imagine the work and dedication you gave to make it possible and to assemble so many people of such caliber and dedication and heart." 

                                              ~Deborah, NY

"I wanted to congratulate you again on a very successful conference! The work that you and the Foundation have done to raise awareness and funding for the research and hopefully cure for urea cycle disorders is nothing short of amazing."

                                               ~Leslie, Washington, DC

"The conference was amazing. Every time we attend we see so much progress."

                                               ~Mira, Maryland

"This was our first conference and it truly was such a fabulous weekend. It was such a memorable weekend and we learned so much! Please let me know how I can be of service to NUCDF." 

                                               ~Katie, Maryland

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

M., Citrullinemia, Arizona, USA