C.J.’S Fund
For Urea Cycle Disorders

C.J.'s Fund for

Urea Cycle Disorders

is a non-profit organization

devoted to making a

difference in the world of

Urea Cycle Disorders (UCD)

CJ’s Fund

For

Urea Cycle

Disorders

CONTACT THE FARR FAMILY                                   

CONTACT THE MAGYAR FAMILY                                   

C.J. Farr

C.J. Farr had no recognizable symptoms for the first year of his life and was then diagnosed with a UCD shortly after his first birthday, when he became violently ill. C.J.’s symptoms mimicked those of the stomach flu and therefore, his UCD went untreated for almost a week. During that time, he unknowingly sustained high blood ammonia levels  

 

Throughout the years, the doctors have continued to struggle to maintain stable metabolic conditions, for C.J., during times of crisis. Because, despite C.J.'s expensive daily medicines and formulas and his parents diligent monitoring of his protein intake,

his body's careful balance can very easily be knocked askew. The culprit can be a minor illness, such as a fever; or a bit too much or too little protein; or seemingly nothing at all. OTC is one of the most difficult Urea Cycle Disorders, in regards to maintaining the body's metabolic stability.

 

This fund was created in 2007, in honor of C.J. and his resilience and perseverance as he lives day to day with the challenges and struggles of his UCD.

Mission Statement

Increase public awareness regarding the importance of Newborn Screening - in an effort to save children's lives - who otherwise might go undiagnosed or undetected.

 

Educate health care professionals and individuals regarding the rarity and

symptoms of UCD.

 

Stimulate and support research for new treatments and/or a cure for UCD.

 

Raise funds for the

National Urea Cycle Disorders Foundation (NUCDF). The NUCDF is a non-profit - and the only - organization dedicated to the identification, treatment and cure of Urea Cycle Disorders. Individuals suffering from urea cycle disorders face many challenges in their lives and desperately need the support and research that is provided by the Foundation.

 

 Raise awareness regarding the importance of becoming an organ donor. Individuals with UCD often require a liver transplant. Please help save a life and become an organ donor.

 

Thank you for supporting our cause

and our quest to find a cure.

Mitchell Magyar

Mitchell Magyar was diagnosed at seven days old, when the State of CT newborn screening test confirmed that he had a UCD.

At the time of diagnosis, Mitchell was already showing signs that he was not well. He was losing weight, was refusing to eat, and was extremely lethargic. All these symptoms were signs of a metabolic disorder, however; could have also been symptoms of non-threatening newborn baby issues. Therefore, neither the doctors nor the family were aware that anything was seriously wrong, until they were notified of the newborn screening results.

 

By the time that they were contacted, Mitchell was, unknowingly, already very ill and had sustained extremely high blood ammonia levels that may have damaged his brain and organs, specifically his liver.

 

At this time, it is unknown regarding Mitchell’s neurological and developmental status, due to the newborn presentation of his disorder and to the buildup of argininosuccinic acid in his body, caused by his specific type of UCD.

 

Created in honor of C.J. Farr

 

Two families - the Farr's and the Magyar's, alongside countless beloved family members, friends, and volunteers - have committed themselves to this very important cause.

 

Together- we are one step closer

to a cure!!