2013 Urea Cycle Disorders Virtual Conference

2013 NUCDF Annual Conference

A Live Web Event
Saturday, July 20, 2013

10:45 AM - 5:00 PM Eastern Standard Time

Simulcast in Español!

The only UCD event of its kind in the world was a wonderful success! Thank you to all our participants around the world!

For the first time, our NUCDF Annual Conference was held online as an "international web conference" event.  No travel, no expenses, no stress!  No matter where a family lived, they could be part of this unique opportunity for UCD families and medical professional to learn about new advances in research, new treatments, and cutting-edge management insights that can help improve the lives of children and adults with UCD.

How the Virtual Conference worked

Over 200 participants from around the world attended via a computer or mobile device with an internet connection, or by calling in on a toll-free telephone conference line.  It was great for families who have never been able to attend our conference before! The conference was also simulcast in Spanish.

Knowledge - virtually

Working together, our NUCDF families and international community of committed researchers and medical professionals are making a major impact in advancing the understanding 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! Our virtual conference brought families and medical professionals up to date on the latest advances in UCD from this research. 

Stay informed

You'll want to stay up to date on the latest developments, no matter where you live.  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!

 

WEBCONFERENCE PROGRAM AT A GLANCE

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

  • Keys to Stability - Dietary Management of UCD
  • Liver Transplantation for UCD
  • Improving Outcomes - updates on optimizing treatment and management
  • Understanding the effects of UCD on brain function and behavior
  • Practical tools for improving performance and managing difficult behavior
  • New findings about the oxidative stress, nutrition and immunity
  • UCD advances and new insights from clinical research studies
  • International collaborations to accelerate research for UCDs
  • Special session on treatment and management for families in Latin and South America.
  • And More!

REVIEWS, COMMENTS FOR THE 2013 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 suprised (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!"

 

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


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

    


                

Jon Oliphint receives the NUCDF Hero Award for his participation in the pioneering nitric oxide in ASA study.

   

Dr. Brendan Lee, a superstar in the UCD research world and a favorite of our families.

Michael Vestal, Tresa Warner and Mary Grace Vestal pose for the camera after presenting NUCDF with donation check for $20,000.

The Bostwicks, Toni Martinez, Deb Hook, RD, and Jessica Quick raising awareness and educating legislators on Capitol Hill about the needs of our patients and families.


 

 

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

Selected Speaker Bios

Downloads/Print Handouts

Conference Flyer

Full Agenda

Contact us:

Email: CureUCD {insert @ sign}nucdf.org

To discourage spam, we have disguised the address - remember to insert the @ sign and remove the brackets.

Phone: (626)578-0833


Sponsors

Thank you to our conference sponsors for their support in making it possible for us to tackle this new approach to providing families and affected individuals with the information they need about treatment, management and research for UCD.

Platinum Sponsor

Hyperion Therapeutics

Gold Sponsor

Recordati Rare Diseases

Silver Sponsor

Cytonet, LLC

Comments from our UCD online community:

"Looking forward to the virtual conference! I would like to hear about learning issues that the children may be facing and what therapies can be used to help improve their outcome. I always love the great nutrition tips, too!"

"I'd like to hear about the impact of UCD as we age - I think I am one of the oldest here in our group with OTC, I'm 54 years old."

"I'd been thinking we would have to wait a couple of years until our boys were older to attend a conference, but now we can attend virtually this year! Looking forward to it"

"The virtual conference is a great idea!"

"We are very much looking forward to the virtual conference and the wealth of information I know it will contain."

"Can't wait!"

 

NUCDF Hoops for Hope Classic Cure the Cycle Challenge