News and Announcements

NUCDF President Tresa Warner talks about her family's participation in the Longitudinal Study of Urea Cycle Disorders, and thanks the National Institutes of Health for its support of the Urea Cycle Disorders Consortium

We can make a difference and help end the devastating effects of urea cycle disorders.
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New Educational Videos

Baby Steps - Learn the Signs, Act Early: Helps parents measure their children's developmental progress by monitoring how they play, learn, speak and act. Early recognition of developmental disabilities is critical for obtaining early intervention for children with urea cycle disorders.

Put Your Hands Together: Learn how to help stop the spread of colds and flu and stay healthy.

Plate Full of Color: Teaches kids the value of eating a variety of colorful and healthy foods.

New! NUCDF Family's story featured on CBSSports.com

"It's No Sacrifice: Daddy's Little Girls Overshadow Hoops, All Day Every Day"

NCAA assistant basketball coach, Jeff Strohm, left his promising career after two of his daughters were diagnosed with a urea cycle disorder, argininosuccinic aciduria (ASA).  The journey began when ASA was detected in one of his twin girls on newborn screening.  After learning about the symptoms of ASA, the Strohms realized their 5-year-old daughter had been showing signs, and she was then also diagnosed with ASA. The Strohm's are committed to helping NUCDF raise awareness and support research.  Now with Triple Crown Sports, Jeff has organized an NCAA tournament in November, "Cancun Challenge," which is helping raise awareness of urea cycle disorders.

Special Survey about current treatment options mailed to NUCDF Families

"That was easy!" says Tresa Warner, OTC mom, after completing the online version of the survey.

NUCDF, in collaboration with market research firm Harris Interactive (Harris Poll) and a biopharmaceutical company, recently conducted an important survey of UCD patients and caregivers.  The survey results are critical to increasing the understanding of issues concerning current treatment options faced by patients and caregivers. Survey and instructions for both paper and online versions were mailed to NUCDF families October 21, 2008.  Deadline for completion was November 7, 2008. 

Over 80 Pediatricians attend Educational Symposium on UCDs sponsored by NUCDF

Boston Sheraton Hotel, Saturday, October 11, 2008

"Inborn Errors of Metabolism: A Practical Approach to Identifying and Managing Urea
Cycle Disorders," presented by Dr. Mark Korson

Audio CD Available for Medical Professionals: To request audio CD contact Boston Symposium CD

More Information on Symposium

NUCDF Announces 2008 Fellowship Grant Award


The National Urea Cycle Disorders Foundation is pleased to announce that our first PostDoctoral Fellowship Grant has been awarded to Ayelet Erez, M.D., Ph.D. of the Department of Molecular and Human Genetics at Baylor College of Medicine. The award was formally announced at our recent 2008 NUCDF Conference in Lake Buena Vista, Florida. Dr. Erez was on hand to receive the award and provide conference participants with an overview of her involvement in urea cycle disorders research and her current project.

The purpose of the NUCDF's Fellowship Grant is to improve the quality of care for UCD-affected individuals by attracting promising new investigators with interest in biochemical genetics to the field of urea cycle disorders. The Fellowship helps support postdoctoral Fellows specialize and focus on research, clinical treatment and coordination of multidisciplinary care of UCDs in the United States, while advancing the understanding and treatment of our disorders.

ARCHIVED for access! Interactive CME seminars Behavioral Disorders, sponsored by Exceptional Parent

Autism Program Part I:
The Early Warning Signs, Diagnosis, Intervention, Treatment and Management of Autism Spectrum Disorders in Infants, Children, and Young Adults.
Click Here for More Information

Autism Program Part II:
Psychosocial Issues That Impact on the Overall Management of Autism Spectrum Disorders in Children and Young Adults.
Click Here for More Information

GIVE ME A BREAK!

A Family Guide to Respite:  Designed to increase parent and provider knowledge of respite programs and partnerships.
Click Here for More Information


In The News!

The Wall Street Journal: Addressing the Fallout of Newborn Screening

Government and Researchers Seek to Reduce False Positives, Improve Physician Education and Follow-Up for Families:
The recent adoption of widespread screening of newborns for congenital health problems is saving thousands of lives every year, identifying potentially deadly conditions in time to begin treatment...
Click Here for More Information



Urea Cycle Disorders Consortium featured on Good Morning America

Mark Batshaw, M.D., Principle Investigator for the Urea Cycle Disorders Consortium and member of the NUCDF Medical Advisory Board, was interviewed by Good Morning America for a segment that aired May 7, 2006.  The segment profiled the Rare Diseases Clinical Research Centers, sponsored by the National Institutes of Health.  The segment focused on our Urea Cycle Disorders Consortium as an example of this pioneering NIH project.



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  SAVE THE DATE!!

 Registration packets were mailed to NUCDF families on April 10.  Click the conference logo for more details and info on hotel accommodations and reservations. Online conference registration is also available.

For Medical Professionals

Satellite Symposium to the 11th International Congress on Inborn Errors of Metabolism

"Overcoming Barriers--New Developments and Future Directions for Urea Cycle Disorders"

August 27-29, 2009

La Jolla, California

Call for Abstracts Deadline 5/15/09

Contact: Cynthia LeMons

       NEW!

"BAGS FOR MITCH"

This trendy Bagolita handbag was custom designed in honor of Baby Mitch to support NUCDF. 15% of your purchase will benefit NUCDF. Learn how to order your bag and read more about Baby Mitch.

SAVING LIVES Awareness Bracelets NOW AVAILABLE

UCD Awareness Brochures

UCD Awareness Bracelet Tags


Customizable UCD Awareness
Bracelet Tags

¡Folletos del conocimiento de UCD en español!

Help Move  Research Forward by participating in critical research studies. Join the Research Registry

2008 Family Conference DVD NOW AVAILABLE

2007 Family Conference DVD NOW AVAILABLE

2007 Resource CD NOW AVAILABLE


News

NUCDF Family's story featured on CBSSports.com

Urea Cycle Disorders Consortium featured on Good Morning America

Expansive Effort is Begun to Study Rare Diseases - Wall Street Journal

NUCDF Family Describes Struggles with OTC in Hartford Courant Article





Thank you to our families, and all who donated to the 2007 Mythical Ball!
2007 NUCDF Family Conference

2007 X Links Golf Tournament

2006 NUCDF Family Conference