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.
 

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.
 

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.