“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
Meet Tim and Sue! Tim is one of our amazing, out of this world, extraordinary volunteers who heads up the Madison Great Steps Walk 4NF! Tim and Sue attended the first Madison walk, hosted by Diana. There were maybe 20 people there, Tim says they don’t remember how they heard about the walk. He became involved immediately and with the help of Kristin and Katy (below) started to grow the Madison group. The walks started out very small with little food items and only a handful of raffle prizes. After a bit, the group split due to a move and other interests putting Tim in the Lead Volunteer role.
By simply staying involved, Tim’s passion helped to keep it going. He took it upon himself to seek out donations for raffle prizes, silent auction items, and food/beverages. He did all of this to make the event more enjoyable for all of those in attendance. He developed lasting relationships in the area simply by asking if local businesses would like to be involved in the Great Steps event.
When asked about his favorite moment Tim said “Watching the event grow into more of a celebration atmosphere. I think that by adding the DJ a number of years ago made a big difference, where it changed from simply being a fundraising walk where participants come, walk and go home, to an event where people hang out together, visit, share NF information and experiences, maybe make new friends, and share some fun time together. I would call it my “proud parent” moment as I would watch everyone having a fun time, and watching the number of participants and funds raised increase each year. Last year we had about 225 participants and raised about $25,000. The event now also has several food and beverage items added to the point where a nice breakfast and lunch was available.”
The NF Midwest walks are more than “just a walk”, they create awareness for NF, families and individuals can interact with other attendees, sharing their experiences and information. They’ve hosted UW-Madison’s Bucky, Piggly Wiggly’s Mr. Pig, and a handful of Princesses. The walk is currently hosted by Capital Brewery, who provides an awesome Bier Garten for our event.
When asked what advice he would give others who are looking to volunteer Tim said “Be willing to commit to the cause. Putting together an event like this takes time, a lot of leg work, and reaching out for donations. The past several years, I would start the process in January for an event that would be held in May. Many of the businesses have budgets for donations, and if you don’t ask early. chances out you will miss out.”
Thank you so much Tim for your years of committment and hard work!Tim is looking to take a step back and NF Midwest is hoping to help find a volunteer to take over. He is more than willing to assist with the 2021 Madison walk and help the new Lead Volunteer. It could even be more than 1 person, more hands make less work right? If you would be interested please reach out to us via the contact form, or 630-945-3562.