Community that Keeps Going & Growing

Author: NF Network

Published On: 07/22/2024

The last weekend of June was truly special for the NF Community as friends and family gathered at Boardman Park, Ohio to raise funds for neurofibromatosis, share knowledge, and offer support. This walk always feels like a heartwarming family reunion, with both long-time participants and new faces coming together in this unique community.  

It was incredibly moving to see Team Frank the Tank and Team Gabbi returning to celebrate the lives of their loved ones, both lost too soon. Amie Petras and her father, Ron, also joined the walk despite some health battles. Ron kindly captured professional photos of the event. We were also touched to meet new families such as Team Haylett’s Go! and Team Bree’s NF Warriors, and were so grateful for the continued support from groups like Team Laret and Lexie’s Slayers, as well as the distant but appreciated backing from Team #ScullyCoffee4NF.  

The strength, determination, and warmth displayed by all the participants and their families were truly inspiring.  

Following the walk, a free educational Lunch and Learn session was presented by Alexion. Ohio Native, Mike Sager, discussed caring for a child with NF1 Plexiform Tumors (PN), the importance of PN monitoring, and how to build an NF1 PN team.  

Jenn Krawchyk, the dedicated walk chair for Boardman, has been a true driving force. Her efforts to raise awareness about neurofibromatosis type 1 (NF1) have been truly admirable, and the blossoming of the NF community over the last 11 years is a testament to her commitment.  

A huge thank you to Jenn and all the wonderful friends and families who attended. We are looking forward to being back at Boardman on July 19, 2025. We hope to see you there! 

Learn more about #NFStrong events and how you can get involved here.