Mentor

What I wish I knew about managing PKU
Keeping track helps you stay on track. Whether it’s counting phe/protein from food or checking blood levels, find something you can keep track of to help you stay accountable.

Successes I’ve seen as a mentor
I think my mentees enjoy being able to talk to someone else who has PKU. It can be very comforting knowing they’re not alone. I may have had a similar experience to share that we can talk about. It’s also nice hearing how others manages their diet because it may give new ideas or confidence to make changes.

My fun fact
I’m currently learning Portuguese and have traveled to Brazil multiple times. If you ever want to go there, I have plenty of tips and advice about what to eat and how to find protein/phe content in native foods.

About Jennifer

As a parent of two daughters diagnosed with PKU after newborn screening, I look forward to sharing ideas, experiences, goals and resources with people in the PKU community as a mentor. I am an author and scientist, and published a book on pregnancy, childbirth and early years caring for children with PKU. I was on a plant-based diet for many years and to this day, coming up with new low-protein plant-based meals and recipes is a big interest of mine. I’ve had a lifelong interest in science and enjoy reading and sharing news on health, medicine and genetics.

About Annie

I am a 32-year-old with classical PKU and have been on diet since diagnosis at birth. While PKU has never defined me, I have always been grateful for the connections and opportunities it has provided me! I have navigated childhood and playing sports, going out of state for college and navigating being on a university meal plan and most recently the challenges that maternal PKU can bring! I love helping those in the PKU community and value those connections so much. I am a listening ear, someone who “gets it”, and can walk with you through the trials and triumphs that PKU can bring!

About Karen

I’m very proud to be a mom to a college student with PKU, and I am also a Registered Dietitian Nutritionist! It is very rewarding to help other people find creative solutions to navigating PKU care, both formula and food. Our family has learned many ways to navigate living with PKU and I really enjoy sharing information with other families. There are a lot of things you learn by living with PKU, and I like meeting new people and helping people with their own journey. Helping people thrive while living with PKU is one of my passions.

About James

I’m a 26-year-old male living with PKU, which has shaped my discipline and perspective. For the first 24 years of my life, I followed a strict low-protein diet. I am now on Palynziq as part of my treatment journey. I enjoy blending the PKU lifestyle with athletics, playing soccer regularly and having climbed two major mountains. Recently, I graduated from college and now work in finance software engineering at Cognite in Tempe, where I bring the same resilience and problem-solving mindset from managing PKU into building technology that makes an impact.

About Kelly

I’m 26 years old and was diagnosed with classical PKU at birth. One of my three brothers also has PKU, so supporting each other through our “diet for life” has always been part of my story. From navigating birthday parties and college dorm life to managing insurance hurdles and work dinners, I’ve grown up learning how to advocate for myself while staying committed to my health. I’m passionate about helping mentees do the same.
Having PKU has shaped me into someone who values empathy and inclusion – as we know what it feels like to be othered. While living with PKU isn’t easy, there is strength in embracing what makes us rare! As a mentor, it is my goal to encourage and empower my mentees to “see the good” in our diagnosis and equip them with the tools not just to manage PKU — but to truly thrive.

What I wish I knew about managing PKU
I wish I knew that so many in the PKU community have experienced the same difficulties that I experience and that they’re willing to support me, so I didn’t have to feel so alone. It can be overwhelming when you feel isolated. But the community around me helps me manage that mental toll and gives me the accountability to help me be my best.

Successes I’ve seen as a mentor
I’ve seen my mentees benefit by having someone in their corner that understands exactly what they are going through. Some of my mentees have never spoken to someone else with PKU before. It can be daunting getting back on diet or just improving on habits, especially when everyone in your life has no idea what living with PKU is like. When someone else who’s been there can offer a listening ear or ask challenging questions, it can significantly help.

My fun fact
I’ve run marathons, completed triathlons, and was a rower in college. I love challenging myself with difficult tasks!

What I wish I knew about managing PKU
When my daughter was first diagnosed, I struggled with feeling so alone. I didn’t know what to expect as she grew. I got involved rather quickly and no longer felt alone and now that she’s 9 I know that we can do this together. We can manage her diet and work through anything that might come up. I think everything that we’ve struggled with has made it easier to assist our mentees. We’ve been able to work together through issues that have come up.

Successes I’ve seen as a mentor
I think everything that we have struggled with has made it easier to assist our mentees. We’ve been able to work together through issues that have come up.

My fun fact
My daughter Norah has a nonprofit called Norah’s Bracelets for a Cause. I also love to travel. My dream is to go to Italy and Ireland.

About Desirae

I’m a mom to two awesome kids, Deckard and Peyton. When Deckard was diagnosed with PKU at birth, we were thrown into the deep end, trying to learn everything PKU while adjusting to being new parents. The kindness I found in this community was an absolute lifesaver, and it’s the reason I’m so passionate about paying it forward today. When my daughter Peyton was born, we had to readjust again, as she did not have PKU. Most nights, I prepare 3 different meals! Life with PKU has taught me so much about resilience and finding my own rhythm. I enjoy meeting new PKU parents and offering support.

What I wish I knew about managing PKU
In my younger days, I was much less controlled on my diet. I knew that I wasn’t managing my PKU as well as I should but when I had other symptoms I failed to connect it to my PKU. After I made some changes to my diet and healthcare, I noticed many of the issues I had were greatly improved.

Successes I’ve seen as a mentor
I’ve had the privilege of mentoring many individuals throughout my career. The main focus of my mentorship is on improving specific areas of interest that my mentee has been wanting to work on.

My fun fact
My intellectual curiosity is unquenchable. I spend a considerable amount of time learning and studying new topics, my goal in life is to become a Jack of all trades.

About Kala

I’m a mom to two boys, my youngest of whom was born with PKU and diagnosed through newborn screening. The early months felt isolated, filled with unknowns around development, social life, and navigating insurance coverage. Over time, I came to appreciate the reassurance in the phrase “it gets better,” and we found a rhythm that works for our family.

My son is thriving in school — confident, outgoing, and able to advocate for himself. I’m passionate about supporting families in those early months, helping parents empower their children to be their own best advocates, and ensuring families have the resources and understanding they need to navigate insurance and PKU care. My goal is to help families feel confident and supported so life with PKU can truly feel like living.

What I wish I knew about managing PKU
I wish I would have known that it’s okay to ask for help, you aren’t in this alone, and there are other people who’ve gone through what you’re going through.

Successes I’ve seen as a mentor
My mentees have benefited from understanding they aren’t alone and that there’s someone in their corner to help them through the good, the bad, and the ugly.

My fun fact
I compete in Trials events, Dirt biking and snowboarding.

About Kristi

Kristi is an adult with PKU born and raised in Arizona. She was taught “diet for life” from a young age and had ups and downs but always stayed “on diet” and drank PKU formula. She graduated with honors from high school and with two bachelor’s degrees from the University of Arizona. Kristi helped found the Arizona Network for PKU and Allied Disorders.

Kristi and her husband have four boys with PKU who joined their family through international adoption. She works part-time as a school nurse and spends her “days off” managing their PKU. Kristi uses her experience as a person living with PKU and as a mom of children with various levels of phe tolerances, treatment options, and struggles to relate with a wide variety of people in the PKU community. Kristi loves being a mentor because she can both support and be supported by others “in the trenches” with PKU daily life!

About Suzanne

Being diagnosed with PKU within a few days of birth meant learning responsibility early. Managing a strict diet requires planning, awareness, and self-advocacy which are skills that carry over into every stage of life. In college, I played tennis and was able to balance athletics as well as academics with careful health management. Entering the workplace, as a special education teacher and eventually a district administrator, brought new situations in which food was central, but preparation and confidence helped me navigate those moments. PKU didn’t limit my goals; it strengthened my resilience. Through mentoring, I hope to work with others to show that challenges can build powerful life skills. With support, planning, and determination, it’s possible to pursue ambitions fully while managing PKU with confidence.

About Carol

Raising my young daughter with PKU has been an incredible journey of studying and making mistakes but also learning and growing from my mistakes. As a mentor, I hope I can share my personal experience with PKU and support mentees in finding their own tools to deal with PKU and its challenges. I am originally from Rio de Janeiro, Brazil, but I have moved to Texas in 2016 after finding the love of my life.

What I wish I knew about managing PKU
This is difficult for me to answer because I was let off diet at the age of 8, in 1974. At that time, PKU doctors didn’t know diet is for life. I grew up, for the majority of my life, off diet and never learned to count protein or phe so, if I need to return to diet these would be the things I need to learn. I currently manage my diet with Palynziq.

Successes I’ve seen as a mentor
This is the first year that I will be a mentor for the NPKUA. I look forward to the chance to connect and share my journey with others with PKU. However, in my professional life I work as a Counselor and have guided people through life struggles.

My fun fact
I was the first person in the State of Maryland diagnosed with PKU by Newborn Screening to the best of my knowledge. I’m a husband, father of 6 adult children, and I have 6 grandchildren, but my spirit is much younger.

About Nicole

Hi, I’m Nicole! I’m a 30-year-old nurse living in Oregon, and I’ve been living with PKU my entire life. I’m married to my wife, and I planned our wedding last year while balancing travel, work and PKU! Proof that this diagnosis can fit into a full, joyful life. I love to travel, hike, backpack, cook, try new coffee shops and attend PKU events to stay connected to the community. I’m a big believer in progress over perfection! As a mentor, I aim to be supportive, creative with ideas and to help others build confidence and independence with their or their families’ PKU!

About Valerie

I am 57 years old and am living with PKU. I was diagnosed at birth (first baby diagnosed in my county due to newborn screening). I have seen so many positive changes in the treatment of PKU. I was blessed to have had supportive parents and family. As an adult, I saw my circle of support dwindle, and have experienced daily struggles, including adhering to the restrictive diet, managing side effects, navigating insurance and finances, caring for family members and becoming a mom, all while trying to keep up with my own health challenges.

As a mentor, I hope to be a supportive place to share, ask questions, and vent frustrations. Most of all, I know what it is like to feel alone in the journey and my wish is that no one ever has to feel this way.”

About Kelci

I’m a working mom to two young kids with PKU. We had a lot of questions and concerns in the early days, but over time we hit our stride, connected with the community and learned to navigate daycare. I’m passionate about matching meals when it’s important to my kids, doing what works for your own family and helping other parents feel less alone in what can feel like a really isolating diagnosis.

About Melissa V.

I’m Melissa, a mom to a little girl with PKU diagnosed through newborn screening. Those early days were overwhelming, but over time we found our rhythm and an incredible community. I’m passionate about helping new families feel less alone and more confident navigating PKU. As a mentor, I aim to offer encouragement, practical tips, and a listening ear while reminding families that they don’t have to navigate this journey on their own.

About Blaide

I am a 30-year-old male diagnosed with PKU at birth. The support of my parents, geneticists and dietitians was crucial in teaching me to manage my diet effectively, and their impact drives my passion for helping others in the PKU community. Growing up, I navigated the challenges of maintaining low protein intake while competing in sports, particularly in the years before high protein-equivalent formulas. My desire to understand my condition led to developing a fascination with science, eventually earning a PhD, and pursuing a career in life science strategy with a focus on genetic medicine. This background allows me to provide a unique perspective on managing PKU as new therapies emerge. Outside of this community, I also enjoy mentoring my younger siblings and spending time with friends and my fiancé.

About Karen

At 40, I’ve built a fulfilling life and career as a treasury professional with a master’s degree and a commitment to staying active and healthy while living with PKU – being in treatment my entire life. I’m an avid reader who belongs to two book clubs, always curious and learning. Mentoring is a meaningful part of my life—I take an individualized, people-first approach, meeting others where they are because I believe growth is never one-size-fits-all.