Michelle Cribbet

President

cribbets@hotmail.com

Hello! My name is Shelly and I'm the proud mommy of a little girl with PKU, named Hannah Rae.


When my husband Rick and I got the news that our precious new baby had something wrong with her, we were devastated. What was this PKU, how was this going to affect our lives, will we be cheated out of the daughter that we were supposed to have? Obviously the answer to that question was "NO". I know that now, but as all new PKU moms know, it takes a minute to get there. It is because of that, that I decided that I had to help make a difference. I had to get out there and make people aware of what PKU was. In order to help get this accomplished, I got with MACPAD about starting a Chapter for the State of Ohio & proudly agreed to be the Chapter's Chairperson. 


Even though I am thrilled with the fact that being a MACPAD Chairperson will allow me to raise money for research, my heart lies in awareness and support. I want the community and other new families to know what PKU is and then to know that it's ok. I have a bunch of ideas & I can't wait to get started!

I'm fortunate to have an extreme support team. From my mother-in-law Betty who cares for Hannah while I work, to my parents Pam & Steve who accompany me to all of Hannah's Clinics to my husband Rick and our son Drew! Everyone that is apart of Hannah's life is continually learning with us, sharing ideas and just being there for support. I hope everyone is as lucky as we are!


Hannah can't eat protein, so what, I'm allergic to the sun...

Virginia Harrison

Vice President

virginia.s.harrison@gmail.com

Virginia, who has PKU, is vice president of MACPAD. 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 is currently pursuing her Ph.D. in fundraising 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 greyhound. 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."

Staci Kasprzyk

Treasurer

staci.kasprzyk@me.com

Staci KasprzyNorah was born October 11, 2014 and was the most beautiful little girl I had ever seen. Being a new mom was extremely terrifying and even more so when we found out our daughter had PKU. It was so scary and we had so many questions. We were so blessed to have had so much support through different support groups and different parents in the area. It took me a couple of months to come to terms with it, but then I realized that I wanted to do all that I could to be that support for new parents going forward.


Now, when a new baby is diagnosed they are given my contact information. It feels good to be able to share my experiences and tell how well Norah is doing. I am on the board of the Western New York PKU Association, as well as the chairperson for the 2017 Lifting the Limits for PKU gala. We do many fundraisers to raise money to help find a cure for PKU. I went to Washington, DC to lobby for the Medical Foods Equity Act with the NPKUA. We have a lot of different events coming up and I will continue to do this until we find a cure!

Kristin Upschulte

Secretary/Central PA Chairperson/Facebook Page Admin

klwolfe3@yahoo.com

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.

Lori Commisso

Webmaster

lori.commisso1@gmail.com

I am a single mother of 3 children and I reside just outside of Rochester NY. The youngest Jacob was born in 2004 with PKU while the older two children, Alex and Kara, were born in 1995 and 1999 and do not have PKU. I currently work as a systems engineer for Kodak Alaris company in Rochester, NY.


I was the initial Upstate NY Chapter Chairperson for about 7 years. Being an active part of the chapter was very rewarding for me and my son, Jacob, who also enjoyed helping and meeting new friends with PKU. As my children got older, Alex is in college and Kara ending her high school career, life seems to get busier so I was happy to welcome a new, energetic, chapter chairperson to the Update NY Chapter this year in 2015 and allow me to step down as the chapter chairperson. I am happy to continue to be a part of MACPAD and help with the website. I look forward to helping with future upstate NY events and meeting new PKU families as the chapter becomes more active.

Noelle Bamonte

Delaware Chapter Chairperson

nmbamonte@verizon.net

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. 

Jen Cardamone

New Jersey Chapter Chairperson

Jen.Cardamone@yahoo.com


Eddie Kasprzyk

New York Chapter Chairperson / Newsletter Editor

ekasprzyk@arbor.com

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.

Jessy Widmer


Ohio Chapter Chairperson

NPKUA Representative

jessywidmer@gmail.com

My name is Jessy Widmer, and my son Elijah was born in 2012. At 7 days old he was diagnosed with PKU. Just like most of us, I had never heard of PKU prior to that initial office visit. I knew immediately that I needed to be involved in the pku community. I joined MACPAD as a member, because I wanted to meet other families with similar experiences. I quickly realized that I enjoyed helping plan the activities for everyone to participate in, and eventually I started working with new families. I became a board member in 2016, and I am really enjoying this experience!


In 2015 we welcomed our daughter, Carly. To our surprise, she does not have pku. This has been a learning experience as well! When she first started eating solid food we called our dietician because we didn't know what to feed her!


Pku has changed my families life in ways I couldn't have imagined. I feel honored to be on the board of MACPAD, and now, represent MACPAD on the NPKUA board.


Jessy Widmer

818-641-7121 j

essywidmer@gmail.com

Bob Johnstone

Member at Large

bob_johnstone@comcast.net

Bob is the Grandfather of two with PKU - Charley Griffith and Bobby Griffith. Bob retired after thirty-two years with General Waterworks Corp. He held several engineering and management positions with GWC and was Vice President - Operations when he retired.

Jill Ambrogio

Member at Large

jillambrogio@hotmail.com

Jill has been part of MACPAD for 3 years as the New Jersey Chapter Chairman. In those 3 years, the New Jersey Chapter has hosted many fundraising and networking events from balloon festivals to low protein cooking demonstrations to PKU pasta dinners and holiday cookie swaps. In 2010, New Jersey will be hosting their first ever 5k for PKU, "Get a Clue Race for PKU" 5k Race and 1 Mile Fun Walk at Colonial Park in Franklin Township, NJ.

Jill and her husband Sebastian have 3 children, Amanda and Tyler who are twins and in the 7th grade, and Nathan who is in the 4th grade. Amanda has classical PKU. Having lived with PKU now for 13 years, it is amazing to see the advances in this disease and in the PKU community (for example, the creation of the National PKU Alliance). We have so much to look forward and the New Jersey Chapter is very excited about making a difference at a local level for the families and friends in our PKU community.

Amanda Ambrogio

Member at Large

aambrogio1213@gmail.com

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.

Ken Barton

Member at Large

kcb1958@aol.com

Ken is the father of Ken Jr. who has PKU and Kara who does not have PKU. Ken is employed by the City of Lancaster as a Captain in the Fire Bureau. He has been a firefighter for 25 years. He is currently the President of the Relief Association in the fire department. He is the President of Local 319, International Assoc. of Firefighters, and the Chairman of the joint Union/City Health and Safety Committee. He was a volunteer firefighter before his City employment. He served on a number of committees there, including two years on the Board of Directors. Ken is also a certified Emergency Medical Technician in the State of PA. He was a member of the former West End Ambulance, who has merged with LEMSA, located in Millersville, from 1979 to 2004. He served on various committees and was a member of the Board of Directors for six years, serving as the Vice-President and President. He enjoys traveling, fishing, hunting and just being outdoors, especially in fall and winter!

Jeremiah Widmer

Member at Large

jeremiah.widmer@gmail.com

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.

Laura Spayd

Member at Large

lspayd@gmail.com

I am the mom to a daughter, Evelyn, born December 2008. On her eighth day, Evelyn was diagnosed with PKU. It is a day etched in my brain as one of the worst days of my life. How can my perfect baby have something wrong with her? I was devastated and broken. My dreams of making Christmas cookies with her were shattered. Now looking back, I understand with lots of support and help, living with PKU is possible. I can still make cookies with Evelyn, we just use different ingredients. My hopes and dreams for my daughter are all intact, regardless that she has PKU. She is a bright, funny, caring girl who just happens to have PKU and eats a special diet. It is a part of our lives daily, but it does not change our day to day activities.


I want to be a part of MACPAD because I believe in the mission to help families. My low days dealing with the PKU diet I felt alone. I don't want others to feel alone. I want to reach out to families and have families reach out to me for support. I want those with a metabolic disorder to meet each other and to know they are not alone. It can be difficult, but with support and knowledge it is possible to live with PKU and not have it define your life.