2014 NUCDF Annual Conference


July 11-13, 2014

Hilton San Diego Resort & Spa

1775 East Mission Bay Drive

San Diego, California

The only UCD event of its kind in the world!
You can't miss this conference!

Join us in sunny Southern California for a life-changing experience. You'll want to be a part of this opportunity for UCD families and medical professionals 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. 

And we are going to have fun! Located on beautiful Mission Bay, the Hilton San Diego Resort & Spa offers breathtaking views and all the activities that make for a great family vacation. The resort fee has been waived for our families! Take a swim in the exotic pool, let the wee ones wade in the baby pool or explore the playgrounds. Enjoy the 7-mile Bayside path by renting bikes, baby trailers, segways or surreys right on site. Adventure out onto the bay on a jetski, wave runner, sailboat, paddle board aqua cycle, fun cat and more! Kick back and relax with jumbo checkers, sand volleyball, bocce ball, or try some tennis or basketball. Take the free shuttle to SeaWorld or Old Town, or head over to the San Diego Zoo. The hotel is located only 6 miles away from San Diego International Airport/Lindbergh field.

Registration:

  • Free for NUCDF members and immediate family
  • $55.00 per person non-NUCDF members or additional non-immediate family members
  • Registration includes Welcome Reception, Friday Workshops,
    Saturday General Session, Saturday Luncheon, Sunday Breakfast

Family/Patient Online Conference Registration Extended to June 15, 2014 - CLOSED

Industry Representative Online Registration - CLOSED

Conference Information/Registration Packet for Families (includes printable mail-in forms)

Kids Kamp - Conference Childcare

  • Childcare is available in our Kids Kamp on Saturday,
    July 12 so parents can attend conference sessions.
  • Free for UCD children and one sibling
    $90.00 per additional child

Pre-registration is required by June 16. Childcare registration form is included in the Online Conference Registration and in the downloadable Conference Information Packet.

Hotel Accommodations:

UPDATE 6/10/14:  Our block of rooms at the Hilton San Diego Resort and Spa, is SOLD OUT. For other options, see the following:


  • July 10-15 Room rate $169.00 per night plus tax   SOLD OUT  Other rooms may be available at the Hilton for 20% off standard room rates by calling the Hilton directly at 619-276-4010 - indicate you are attending the NUCDF conference. Rooms are available at the Crowne Plaza Hanalei San Diego for $175.00 on Expedia here. The Crowne Plaza is 5-10 minutes from the conference hotel. There are other hotels in the area with higher rates ($300-325.00).  We recommend The Dana, Hyatt Regency or Paradise Point (all bookable on Expedia). If you would like to be put on a waiting list for the Hilton, please email us at 2014conference@nucdf.org.

Attraction Discounts:

After registering, families will be invited to a special online community where we will provide updates on discounts to area attractions (SeaWorld, etc.) and invitations to special conference activities (s'mores on the beach and more!).

CONFERENCE PROGRAM AT A GLANCE

FRIDAY, JULY 11, 2014

Afternoon Workshops

1:00pm - 1:30 pm New Family Orientation: Families new to our conference or newly diagnosed with a UCD will receive an overview of the conference and learn 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 will be featured, including how to access NUCDF educational and support resources.

1:30pm - 2:20 pm ABCs of UCD: Receive a valuable overview of fundamental information about UCD. The workshop will provide context for clinical information about treatment and improving day-to-day management, and for deepening the level of understanding of conference presentations.

2:30 pm - 4:30 pm Living Lo-Pro--Designing Meals to Love!: Led by Debra Hook, RD, MPH, UCD metabolic dietician and guru. Learn how to transform your recipes to lo-pro, and get ideas and recipes for creating new healthy taste treats for the UCD diet. Learn about lo-protein products and how to make lo-pro substitutions using "regular foods" the whole family can enjoy. The interactive Workshop will help newly diagnosed families and those wanting a refresher increase their knowledge and understanding of fundamentals and practical strategies for dietary management of UCD using real-life examples, easy-to-access products and new tools.

Welcome Reception

6:30pm - 9:00 pm: For all Families, Kids and Medical Professionals. Come meet other families and your favorite UCD expert!

SATURDAY, JULY 12, 2014

Conference General Session, Luncheon and Breakouts

8:00am - 5:00pm

Keynote address and General Session presentations from top researchers and clinical experts in the field of UCDs. Topics will include:

  • The UCD Longitudinal Study - what are we learning and where do we go from here?
  • Anticipating and preventing hyperammonemia
  • Improving Long-term Health - New Insights on Dietary Management of UCD
  • Liver Issues and Transplantation Options for UCD
  • Upcoming Clinical Trial for new treatment for ASA
  • Latest updates on new treatments for UCD
  • Optimizing treatment and management
  • What UCD patients and families should know about the effects of UCD on everyday and long-term brain function and behavior
  • Practical tools for improving performance and managing difficult behavior
  • New findings about the impact of oxidative stress, nutrition and immunity on urea cycle function
  • UCD advances and new insights from clinical research studies
  • International collaborations to accelerate research for UCDs
  • Breakout sessions
  • And More!

SUNDAY, JULY 13, 2014

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

10:00am:  End of Family Conference. Enjoy San Diego (hit the beach!) on your own or have a safe trip home.

 

Stay informed

You'll want to stay up to date on the latest developments, even if you cannot attend the conference.  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...


REVIEWS, COMMENTS FOR THE 2013 VIRTUAL
ONLINE CONFERENCE

"So pleased to be able to join in this year. 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 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!"

 


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

    


 

 

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

Family/Patient Online Conference Registration CLOSED

Industry Representative Online Registration - CLOSED

Conference Information Packet for Families (includes printable registration forms)

Attractions/Area Info

Selected Speaker Bios

Final Agenda

Contact us:

Email: 2014Conference@nucdf.org

Phone: (626)578-0833


Sponsors

We appreciate the support of our conference sponsors. If you would like to become a sponsor, please email us at 2014conference@nucdf.org for a Sponsorship Packet.

 

Gold Sponsor

Cytonet, LLC

Silver Sponsor

Recordati Rare Diseases

Bronze Sponsors

Vitaflo

Promethera

Lucane Pharma

Nutricia

Comments from our UCD community:

"We can't wait for the conference! We missed seeing everyone last year. We can't wait to hear about all the advances we only hear about at the conferences...we hope our doctor will come this year."

"Our daughter's life has changed so much since she got on the new medication. We will always be grateful for NUCDF's efforts to make the drug possible. We want to thank you in person! We're anxious to hear Dr. Lee's talk this year--it's been so helpful to us in the past."

"The conference is in San Diego? Count us in!"

"I remember our first conference. I was in tears--that there was so much hope, but that there was so much information I didn't realize I didn't know."

"Can't wait!"

NUCDF Hoops for Hope Classic Cure the Cycle Challenge