Meet the UCD Mentors

Meet the UCD Mentors

You don’t have to feel isolated or alone because you’re living with a urea cycle disorder (UCD). The UCD Mentors are patients and caregivers who know what you’re going through because they live with UCD every day too. Watch the video, choose a mentor, and schedule a call today.

About Mentors

Allison Caregiver

"Our daughter Molly was diagnosed at 3 ½ years old.  She has grown into a beautiful and happy young woman. While we work as a family on her treatment, she is proud of her ability to manage her RAVICTI® (glycerol phenylbutyrate) on her own."

Expertise: My true expertise is actually more along the lines of: school (working with staff to appropriately support students and IEP and 504 development) and advocacy and accommodations.

David Caregiver

"My son Isaac was diagnosed when he was 8 years old. Soon after, we found out that my wife was a symptomatic UCD carrier as well.  Over the last 13 years, we’ve tried a number of treatments, but RAVICTI® (glycerol phenylbutyrate) has made a difference for them."

Expertise: Marital issues, managing a career

Isaac Patient

"I was diagnosed with a UCD when I was 8 years old. I tried a couple of different medications before I found RAVICTI® (glycerol phenylbutyrate). Today I’m in college and studying to become a video game designer."

Expertise: School (IEP, homebound tutor, homeschool, college and college accommodations/office of disabilities)

Lamia Caregiver

"My daughter Laila was diagnosed at infancy. Until she was 9 years old, taking her medicine was inconvenient. RAVICTI® (glycerol phenylbutyrate) made a difference."

Expertise: Uncertainty at diagnosis, hospital visits, RAVICTI, managing a career

Lauren Patient

"I was diagnosed at 2 years old. Now I’m in my early 30s and working toward becoming a registered nurse. With RAVICTI® (glycerol phenylbutyrate), I can manage my ammonia levels."

Expertise: Exercise/diet, ammonia control

Patricia Patient and Caregiver

"When my son Isaac was diagnosed at 8 years old in 2004, I discovered that I am a symptomatic carrier of a urea cycle disorder too. Taking RAVICTI® (glycerol phenylbutyrate)  finally made it possible for Isaac and me to have a life while controlling our ammonia levels."

Expertise: Uncertainty at diagnosis, school (former K-5 grade teacher and 3-12 grade homeschooler), ammonia control, insurance, marital issues, healthcare team, hospital visits, RAVICTI, support services (advocacy groups, Horizon support), and managing a career

Roger Caregiver

"We’ve come a long way since our daughter Molly’s diagnosis at age 3 ½ years. Today, Molly is able to easily manage her RAVICTI® (glycerol phenylbutyrate) regimen."

Expertise: While invested in ways to best support my entire family, I also believe it’s really important to make sure that the primary caregiver is being supported.

Yes, I want to connect with a UCD Mentor

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    Please note: UCD Mentors do not give medical advice. Talk to your doctor regarding all treatment-related questions. UCD Mentors are volunteers. In the event that your selected mentor is not available, someone from the UCD Mentor Program staff will contact you to follow up on your request.

    Important Safety information

    Ravicti® (glycerol phenylbutyrate) oral liquid indications and usage

    Approved Uses for RAVICTI® (glycerol phenylbutyrate) Oral Liquid

    RAVICTI is a prescription medicine used in adults and children 2 years of age and older for long-term management of high blood levels of ammonia (hyperammonemia) caused by a condition called a urea cycle disorder (UCD). RAVICTI should only be used if the UCD cannot be managed with a low-protein diet and dietary supplements alone. RAVICTI must be used along with a low-protein diet and, in some cases, dietary supplements.

    RAVICTI is not used for the treatment of acute hyperammonemia in people with UCDs.

    It is not known if RAVICTI is safe and effective for the treatment of N-acetylglutamate synthase (NAGS) deficiency.

    It is not known if RAVICTI is safe and effective in children 2 months to less than 2 years of age.

    Detailed Important Safety Information

    Who should not take RAVICTI:

    • Children less than 2 months of age should not take RAVICTI because it may not be digested in babies less than 2 months of age.
    • Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you get wheezing, shortness of breath, cough, low blood pressure, flushing, nausea, or a rash while taking RAVICTI.

    RAVICTI may cause serious side effects:

    Phenylacetate, a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you experience any of these symptoms while taking RAVICTI: sleepiness, weakness, lightheadedness, change in taste, problems with hearing, confusion, problems with memory, worsening neuropathy (numbness, tingling, or burning in your hands or feet), or headache.

    What are the possible side effects of RAVICTI?

    The most common side effects of RAVICTI in adults include diarrhea, gas, headache, nausea, vomiting, tiredness, decreased appetite, high blood levels of ammonia, and dizziness.

    The most common side effects of RAVICTI in children include upper abdomen (stomach) pain, nausea, vomiting, diarrhea, decreased appetite, high blood levels of ammonia, and headache.

    Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects.

    Before you take RAVICTI:

    Tell your doctor if you have liver or kidney problems, pancreas or bowel (intestine) problems, or any other medical conditions. Tell your doctor if you are pregnant or plan to become pregnant. It is not known if RAVICTI will harm your unborn baby. Tell your doctor if you are breastfeeding or plan to breastfeed. It is not known if RAVICTI passes into your breast milk. RAVICTI may harm your baby, so you and your doctor should decide if you will take RAVICTI or breastfeed.

    Talk to your doctor about participating in a UCD registry. The purpose of this registry is to collect information about people with UCDs to improve care. For more information about the registry program, call 1-855-823-7878 or visit www.ucdregistry.com.

    You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

    This information is not comprehensive. To learn more, talk to your health care provider or pharmacist. For more information about RAVICTI, please see the full Prescribing Information (PDF) and Medication Guide (PDF) for RAVICTI.