Why I Do What I Do: Spotlight on Laci Weatherford, Volunteer Walk Leader August 1, 2017 by Lauren Eva Laci Weatherford is now in her 7th year as a volunteer leader for the St. Louis NephCure Walk. Her incredible efforts have helped grow the walk to a massive event, with more than 100 people in attendance and raising around $15,000 each year! We spoke to her recently to learn about her journey with FSGS and how she manages such a successful fundraiser. NKI: How did you become involved with NephCure? How long have you been involved? Laci at the St. Louis Walk in 2012. Laci: I believe the first time I found NephCure was in 2009 when I was diagnosed with FSGS. I researched on the internet and found the NephCure website. I must have provided my information and said I would like to get involved, because in 2011 I received an email saying they were going to have a walk in St Louis. The email asked if I would like to be on the committee. I said yes. The day I was on my first planning committee call, I discovered I was the committee, the only volunteer for the event that was about a month away. So that year I learned the very basics of putting together a walk and have been working on improving and growing our annual event ever since. NKI: Why do you devote your time and energy to this cause? If you feel comfortable explaining, what’s your personal connection to kidney disease? Laci: After I was diagnosed in 2009, I began my personal journey with FSGS and learned firsthand the terrible side effects of the drugs available and the lack thereof. I learned how precious the little things were and struggled to just get by day-to-day, enjoy my 2 year old baby, and take care of myself. I began to read more on the internet about this disease: sometimes it would be good and encouraging, sometimes not. It quickly became too overwhelming to read the stories from parents who had children struggling with these drugs and side effects. It broke my heart, and I felt it was so unfair. I had lived a good life up until my diagnosis; I enjoyed my childhood, but they were being robbed of simple joys. I received a referral for a specialist in NY and became so encouraged by his accomplishments and his knowledge of the disease. I have tremendous hope and belief the cure and proper treatments are out there. We just need the right people to have the right tools to make it happen. It takes a lot of work to put all the proper channels in motion, and I’m so grateful NephCure is there doing the work to keep progress in motion. I want to do what I can to help fund this process. Laci and members of Team Brayden at the 2016 St. Louis Walk. NKI: What’s the hardest part about being a walk leader? Laci: The hardest part is getting the word to participants. Since this is a rare disease, not many people have ever heard of FSGS or NephCure. Unless you or a loved one is personally impacted, then you are probably not looking for another charitable event to go to. I’ve got to find a way to find the patients and their families. Doctors aren’t willing to help most of the time because of HIPAA policies and various other reasons. NKI: What’s the best part? Laci: There is so much that warms my heart about the event. The first is my family. They drive 3 hours just to be in St. Louis with me on this special day. They also coordinate 75% of the activities and volunteer in any area I need. If it wasn’t for them, I literally couldn’t do this. Second is seeing the other patients. To see them smile and enjoy a day dedicated to them encourages me to keep going. I also love to see the growth in the event, which is the proof we are getting the word out there. My first walk had about 20 people and we raised around $2,400. The walk is now averaging between 100-120 people each year and we raise on average $15,000. That is just amazing to me. NKI: What has surprised you the most throughout your years of leading this walk? Laci: I’m surprised by how generous and easy is it to get donations. Most of the time all you have to do is ask. There are so many business that will gladly give you a gift card, services, or products to help you raise funds. There is no secret to fundraising or formula for getting donations—all you have to do is ask! Mostly likely you are going to get a yes. Laci, center, with family and friends at the 2016 St. Louis Walk. Congratulations and a big thank you to Laci and her supportive team for their incredible efforts each year! With their help, we are one step closer to finding better treatments and a cure for FSGS and Nephrotic Syndrome. We couldn’t do it without them! Interested in volunteering at a walk or creating a walk team? Great! Just email us at firstname.lastname@example.org to get started.