Making an imPACt: Jenn Krawchyk

Author: Akron Children's Hospital
Published On: 10/21/2021

After her son's diagnosis with NF1, Jenn Krawchyk stepped into action. Educating herself and setting out to raise awareness of his rare genetic condition, Jenn founded the long-running #NFStrong 5K in northeast Ohio and found additional ways to share her knowledge and support with her community. As a result, Jenn joined the Parent Advisory Council for Akron Children's hospital. Read Jenn's involvement in her local community below!

What was your path to PAC?
My road to PAC started when my oldest son, Kyle (now 12), was in preschool and was diagnosed with neurofibromatosis type 1 (NF1). NF is a genetic disorder that causes tumors to grow along nerves throughout the body. Kyle has a spontaneous mutation; he is the only one in our family who has NF. Since NF1 is a disorder not many people are aware of, it was important to me to be able to educate and advocate in my son’s school system so that he could get the services and accommodations he needed to be successful. I wanted to be able to then take my experiences and help others who were in the same boat as our family. When Kyle was diagnosed at 6 months old, I knew no one with NF or even what to expect. All I had was my own research and our pediatrician’s advice, and we basically carved our own path. My son’s preschool teacher at the time, Christa, was already a member of PAC in the Mahoning Valley. She introduced me to PAC and encouraged me to attend a meeting to see if it was something I’d like to join. I did, and I knew from the first few minutes of the meeting that I absolutely wanted to be a part of it. I’ve been a part of PAC in the Mahoning Valley for 7 years.
Do you have a favorite PAC memory?
Pre-COVID, I loved visiting the different buildings in the Valley and passing out treats and beverages to the amazing staff and families. It’s always so nice to let the doctors and nurses know that we appreciate them and their hard work, and also to let the parents know that they have support. My fellow PAC members are some of the best people I know. We are truly a family and I respect each of them so much.
If there were no barriers, what would your Dream PAC look like (service, equipment, etc.)? DREAM BIG!
I would love to see more events tailored to families with specific diagnoses and more help/guidance offered to families with disabilities regarding school issues. For example, a program/service where the hospital can help kids aging out of their respective school systems with job opportunities and basic financial planning for families with special needs
Jennifer Krawchyk, who you just met in the previous article, is the Ohio walk volunteer chairperson for the NF Network. The NF Network is a national organization advocating for federal funding for NF research and building and supporting NF communities. The NF Network was supportive in helping to guide the Krawchyk family on their NF journey. The annual #NFStrong 5K is a way to bring NF families and supporters together for friendship, community and support. “I am so proud that we have families from all over our state (including many local families), PA, and more who are able to come together for a few hours of community and friendship,” said Jennifer.

The Parent Advisory Council (PAC) includes parents and caregivers from the Akron and Mahoning Valley campuses whose children have received care at Akron Children’s Hospital. Advisors work with hospital liaisons on behalf of other families to enhance the delivery of family-centered care. Parents serve on hospital committees and participate in hospital focus groups and performance-improvement projects. They also offer support on program development and policy upgrades. Read their full September newsletter here, and learn more about PAC at


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