Virginia, who has PKU, is the co-chair of the PKU Adult program. She joined MACPAD in October 2009 to be more involved in the PKU community and to work with patients and families just like her. Previously, she spent over six years as MACPAD’s representative to the National PKU Alliance (NPKUA) and has contributed to MACPAD’s newsletter.

Professionally, Virginia spent over seven years in the fundraising industry, working for Penn State University and the Philadelphia Mural Arts Program. She recently graduated with her Ph.D. in mass communication at Penn State. In her free time, she enjoys running half-marathons and watching sports of all kinds with her husband and retired racing greyhounds. Her favorite low protein foods include broccoli burgers, veggie pizza, and French fries.

PKU has shaped Virginia’s career interests and personal attitude toward life. "PKU was never a burden for me, but simply another facet of life," she says. "Of course, at times it is frustrating, but I know I can handle anything that life throws at me because I have been able to handle PKU. I want to give back to the PKU community and help others who don't view PKU so positively."

Kristin Upschulte serves as Chairperson for the Central PA Chapter of MACPAD. Kristin and her husband, Dan, have a beautiful son named Dylan, born on July 12, 2010. Dylan is a PKU baby.

On that magical day Dylan was born, Kristin and Dan felt what every new parent feels; joy, happiness, excitement, and most of all, that they were blessed. As first-time parents, they prayed, that Dylan would be a healthy child. And, that is why they can vividly remember the day Dr. Berlin announced that their perfect son had PKU.  

“PKU? What is that?” was their first thought, followed closely by, “How serious is it?” Kristin and Dan were already overwhelmed being new parents, but hearing that their son had a genetic disorder was a traumatic experience.  

Now, Kristin and Dan look back on those days and smile, because they understand PKU. They and Dylan live with it as part of their daily routine, and they still have a perfectly healthy son. Every day is a new learning experience, but they have vowed to take it one day at a time.

Kristin and Dan couldn’t have made it through those trying first PKU days without a strong support system. Dr. Berlin and Andrea Abbee at their clinic in Hershey, PA, truly put these two young parents at ease by repeatedly telling them, “Dylan is going to be just fine.” Kristin and Dan, as well as grandparents, aunts, uncles, and friends, joined together those first few weeks in support of Dylan. They all worked to learn how to raise a child with PKU.

Everyone needs a strong support system. That is why Kristin feels participation in MACPAD is vital. Kristin’s goal as a member of the MACPAD Board of Directors is to get children together of all ages so they can see that they are not alone. She wants Dylan to grow up understanding how to live his life confident in his diet. Kristin also wants all parents of PKU babies to know that their children will be “just fine” too.

Hello my name is Noelle Bamonte and I became the Delaware Chapter of MACPAD Chairperson and a Member of the Board of Directors in 2007. I am the mother of two boys Matty and Tommy. My oldest Matty has Classic PKU. Matty was diagnosed with PKU a few days after he was born in Sept of 2005. Every thought went through my husband and my mind; could we have more kids, could he have kids, would he live a normal life? Could I cause damage to my son if I gave him something wrong? Who else in our family would/could be impacted? These questions are the reason why I want so much to be part of MACPAD. I want to help individuals as they learn their child has PKU. I also want to have a network of people we can talk to about funny stories, food recipes or how we can make their lives a little better. No one is alone, and the first days and or year can be difficult as you learn and accept PKU in your lives. As my son has gotten older, we have conquered old challenges and have found some new ones! Having this network allows you to learn what the future holds for your family, and it can truly be a very bright and positive future.

I grew up in Pennsylvania and then attended the University of Delaware. I graduated with a Bachelor Degree in Accounting and a Minor in Philosophy. After working as an Accountant and AR/AP Manager for 10 years, I decided to become a stay at home mom to enjoy all the things I could with my boys. Once the boys started school, I returned to work part time at a local accounting firm. I was also the treasurer of our PTA and now the treasurer of my sons’ travel baseball team. Matty is a great kid. He is so easy going. He works hard in school and has been on honor roll each marking period. He loves sports and get involved with any activity he can find. PKU is just a small piece of Matty. MACPAD has given me so many opportunities to talk with families and learn about so many things. I have made some wonderful close friends through this community that I would never have had a chance to meet had PKU not been dealt to all of us.

The Delaware Chapter holds events throughout the year. Events we have had in the past are Summer Picnics, Spaghetti Dinners, Day Out at the Blue Rocks, Fundraiser Events at Bob Evans St Patty’s Events and our Annual Golf Tournament. We hope to continue these events so we can meet and help families with PKU in our community. Please feel free to reach out if you would like to see a specific event in the Delaware Area. 

Eddie has recently taken over as the Upstate New York Chapter Chairman. He is also on the board of directors for the Western New York PKU Association. Eddie, along with his wife Staci, are new PKU parents to a beautiful little girl Norah Charlotte. Norah, born Oct of 2014, has classical PKU. When first diagnosed, Eddie and Staci, like so many other new PKU parents had the same thoughts and fears, “this is horrible, how could this happen to us, what are we going to do?” As the weeks and months went on, and with help of others in the PKU community, they realized that everything will be fine as long as proper care and diet are followed.

“The amount of support we received really helped us understand that we will get through this and things will turn out just fine as long as we’re there for Norah and making sure that she follows and stays on diet”. Eddie would like to give back and help those new parents in need, just like he was helped.

The Upstate New York Chapter plans to hold many events, such as walks, dinners, picnics and other get togethers in the near future to meet and help families within our PKU community.

Born with PKU, 21 years old, currently a junior at Montclair State University studying Hospitality Management graduating Spring 2019.

My entire life my family and I have been very involved in the PKU community. As a child growing up with PKU I was very lucky to have been given so many opportunities and activities from the community, and now I would like to give back any way I can. I have had fundraisers and coin drives at Montclair to donate to PKU research I have also sold t-shirts and wristbands to donate as well. I have started small but I hope to achieve a lot at MACPAD and do whatever I can to get closer to finding a cure for PKU.

My name is Jeremiah Widmer and my son Elijah was diagnosed with PKU in 2012. I still remember sitting in our geneticists office shocked and confused as to what our life would be like. I cried in my car because I wouldn't be able to drink beer and eat chicken wings with my son. On top of being a dad for the first time I was thrown this giant curve ball that Googling only made worse. That is until we found MACPAD.

For me MACPAD was the life preserver that our family needed. To know that other families share the same experiences helped get us through that first year and more.

Now PKU has become a part of my life that I'm proud to share and talk about to anyone who wants to know. And that's why being a part of MACPAD is so important to me. To tell those new families who don't think it can get worse. That it gets better and then some.