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 events@nephcure.org to get started.
NephCure Kidney Walk Returns to Houston Area Saturday, November 14th November 10, 2015 by wpengine Houston, TX (November 10, 2015) – The NephCure Kidney Walk returns to the Houston area this Saturday, November 14th to a new location in The Woodlands. The walk brings together Houston area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Alden Bridge Park – The Woodlands, 7725 Alden Bridge Dr, Spring. Registration opens at 9 and the walk begins at 10 a.m. Immediately following, there will be fantastic raffle prizes and a silent auction with the chance to win tickets to the Houston Astros. There is no registration fee, although teams are encouraged to raise at least $500, with a total event goal of $20,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/Houston. Local walk participant Trista Vigil will again be participating in the Houston Walk and asks that you join her this Saturday. “Why NephCure?”, says Trista. “Because it’s personal! It was early May of 1998, just days away from my 14th birthday and I noticed significant swelling in my eyes, lower extremities, and torso. After a doctor’s visit, a hospital stay, and a trip to a pediatric nephrologist 3 hours away from my home town I was told that I had nephrotic syndrome. My official diagnosis of minimal change disease wasn’t “official” until my first biopsy in 2007.” “It was in 2005 that I came across NephCure while doing some online searching about the disease itself.” remembers Trista. “NephCure’s website had so much information. It was about 2 years later that I got involved, I was involved when the Colorado chapter was started and it was amazing to meet people who knew what I was going through. Up until that point I had never met anyone elsewho had MCD, NS, or FSGS. It was wonderful to know that there were people out there that wanted to make my life better by saving kidneys and saving lives!” I recently had a biopsy in October of 2015 and my diagnosis is still the same, which is a relief, but this disease still impacts my life on a daily basis. Every relapse is heartbreaking. Like most people I want a cure, I want better treatments, I want to save my kidneys. NephCure is helping and I am so grateful and honored to be part of the discussions, part of the NephCure Walks, part of NephCure. I have met some amazing and inspirational individuals through NephCure, I just wish we didn’t all have in common what we have in common.” It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease, more than breast cancer and prostate cancer. Some doctors believe kidney disease of this nature might be the next epidemic of our generation. To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/houston or contact Jayne Drew at jdrew@nephcure.org About NephCure Kidney International NephCure Kidney International (NKI) is a 501(c)(3) tax-exempt public charity established in 1999. Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NKI is the only organization committed exclusively to supporting research to identify the cause, improve the treatment, and find the cure of the two potentially debilitating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). ####
NKI Grand Rapids Walk October 18th October 15, 2015 by wpengine Grand Rapids, MI – The NephCure Kidney Walk returns for the 4th year to the Grand Rapids area, Sunday, October 18th. The walk brings together area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Millennium Park, 1415 Maynard Ave SW in Walker, MI. Registration opens at noon and the walk begins at 1 p.m. There is no registration fee, but teams are encouraged to raise at least $1,000, with a total event goal of $10,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/GrandRapids. The NephCure Kidney Walk is especially meaningful to local residents and co-chairs Heather Luchies and Tressa Hollinger. Both of whose lives and families are impacted by these conditions. “Being involved in the planning of this walk is my way of giving back to NephCure, who are working hard to find a cure for my disease”, says Heather. “Plus I find it helps “embrace” my disease rather than sit on the couch and do nothing about it.” Both Heather & Tressa will be on their local Fox 17 station this Saturday morning at 7:40 to do a live interview about the NephCure Kidney International Walk this Sunday. “This is what I’ve wanted since we partnered with NephCure and started the walk” says Tressa. “More awareness to find a CURE! Let’s rock this Heather Luchies!” To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/GrandRapids or contact Jayne Drew at jdrew@nephcure.org