2015 NUCDF Annual Conference


July 10-12, 2015

Cleveland Marriott Downtown at Key Center

127 Public Square

Cleveland, Ohio 44114

A ten-thousand mile journey begins with the first step.
You can't miss this conference!

This year's conference moves to the Midwest/Great Lakes region! Join us in Cleveland, Ohio for a life-changing experience. You'll want to be a part of this unique 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. 

Our conference will be held in conjunction with a scientific meeting of our National Institutes of Health Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium. Now in its 10th year, 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 on Saturday, July 11, will include presentations and the latest research updates from Consortium scientific and medical experts.

Our conference hotel, Cleveland Marriott Downtown at Key Center, is 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 offers breathtaking views of Lake Erie and the city skyline.  The hotel is easily accessible from two area airports: Cleveland Hopkins and Akron/Canton.  We've negotiated a special discounted rate for our families and medical professionals attending the conference from July 8-15, 2015.

Conference Registration:

Registration Deadline June 10, 2015

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

Online Conference Registration

Invited Exhibitor Online Registration

Childcare Registration (also included in Family/Patient Online Registration)

Downloadable 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 11 so parents can attend conference sessions.
  • Free for UCD children and one sibling
    $90.00 per additional child

Pre-registration is required by June 10. Childcare registration form is included in the Online Conference Registration and in the downloadable Conference Information Packet.

Hotel Accommodations:

Reservation Deadline June 10, 2015

Families/Patients/Healthcare Professionals

  • Discounted group room rate for conference families and medical professionals. Come early, stay a few days!

                    July 8-15 $149.00 per night plus tax

  • Group Reservation links for families/medical professionals are included in Online Conference Registration forms, or visit NUCDF Group Reservations

Invited Industry Representatives and Exhibitors

Conference Online Community:

After registering, conference families and patients will be invited to a special online community where we can network together, participate in discussions, sign up for special conference activities and more. Let's get to know each other!

CONFERENCE PROGRAM AT A GLANCE

FRIDAY, JULY 10, 2015

Afternoon Workshops

12:30pm - 1:15 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.

1:15pm - 2:00 pm  I Never Knew That!: Receive a valuable overview of the pillars of UCD management and what you should know about the underlying mechanisms that can help you improve stability.  The workshop will provide context for understanding clinical and laboratory findings that provide clues to maintaining stability and improving day-to-day management.  Great session for deepening your level of understanding getting context for the 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. Get new ideas and recipes for creating healthy taste treats for the UCD diet. Transform your favorite recipes to lo-pro. Get more out of living lo-pro by learning about new 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 everyone wanting a new approach to lo-pro to increase their knowledge of 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 Patients, Families, Kids and Medical Professionals. Come meet other families and your favorite UCD expert!

SATURDAY, JULY 11, 2015

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:

  • Anticipation & preventing hyperammonemic crisis
  • Optimizing and manipulating the UCD diet - why is it the key to stability? Is there a connection between the gut and the brain?
  • How UCD affects learning, mood, behavior and performance - what you need to know.
  • Improving long-term health and outcomes - updates on the newest treatments and management insights.
  • New UCD investigations, advances and clinical research studies - what are we learning and what does the future hold?
  • Liver Issues and Transplant Options for UCD - what does new data tell us?
  • Clinical Trial for new treatment for ASA
  • Communicating effectively with your medical team in clinic and in the hospital.
  • Practical tools for improving performance and managing difficult behavior.
  • What you need to know about participating in clinical trials.
  • Breakout sessions: Adults with UCD, Coping with Caregiver Stress, Liver transplant and more!

SUNDAY, JULY 12, 2015

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

10:00am:  End of Family Conference. Enjoy Cleveland 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...


COMMENTS FROM THE 2014 CONFERENCE

Some conference families gather for a pic

"The conference was so full of information I will use daily to help my daughter live life to the fullest. I learned so much from the presenters, doctors, and other families and individuals living with UCD. Thank you for empowering me with knowledge and filling me with hope."

"We are so grateful to you for this convention of minds. So much great info! We are overwhelmed, but it has stimulated so many new thoughts about how we can improve our daughter's care. We met people that really care and know how we feel.  NUCDF has given us hope. We got information we can trust, and met people who want to help us."

"We thank God every day that despite the fact that our daughter was born with this disease, we have this incredible Foundation behind us. Your support has been incomparable."

"My son got so involved and was blown away by the conference and insists we to to every one from now on. I was so humbled and astonished by the entire gathering. I haven't been to a conference since the 90s, and I cannot believe the progress. It is hard for me to wrap my head around!"

"It was a great conference. I gained so much in hearing about all the advances and what is happening nationwide. If there is any way I can help out on an ongoing basis, please let me know. I am going to try and get the word out to San Diego families who may need some support. Looking forward to next year."

"I had an absolutely fabulous time at the convention! Met so many people and learned so much! NUCDF is like family."

"I want to give a special THANK YOU for putting on a spectacular conference and for all you do for us...without you so many of us would not be here today, you have touched so many lives and for that I am forever grateful."

"The conference was amazing! I really enjoyed getting to meet so many different people. It was truly inspirational. I learned so much more about UCD - I thought I knew everything! We're looking forward to next year."


REVIEWS, COMMENTS FOR THE 2013 VIRTUAL ONLINE CONFERENCE

 

So pleased to be able to join in this year through the virtual conference. 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 virtual 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!"

 


 

 

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

Online Conference Registration

Medical Professional Online Registration

Invited Industry Representative Online Registration

Invited Exhibitor Online Registration

Sponsors - please contact us to request a Sponsor Packet

Conference Information Packet for Families (includes printable registration forms)

Hotel Reservations/Families & Medical Professionals

Hotel Reservations Industry Representatives and Exhibitors

Attractions/Area Info

Selected Speaker Bios

Final Agenda (available in June)

Contact us:

Email: 2015Conference[insert the @ sign]nucdf.org

To reduce spam, we have disguised the email address. Don't forget to insert the @ sign and remove the brackets.

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 2015conference[insert the @ sign] nucdf.org for a Sponsorship Packet.

Gold Sponsor

Cytonet, LLC

Silver Sponsor

Recordati Rare Diseases

Bronze Sponsors

Vitaflo

Promethera

Lucane Pharma

Nutricia

Cambrooke Foods

Comments from our UCD community:

"I'm so excited to be going to my 1st conference!"

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

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

NUCDF Hoops for Hope Classic Cure the Cycle Challenge