Advocating at the State Level: The Journey to Nephrotic Syndrome Awareness Month June 17, 2019 by Kylie Winkler Barriers are being broken when it comes to Nephrotic Syndrome advocacy and awareness, and the woman behind the effective disruption is Donna Phenald, NephCure Kidney International’s Community Fundraising Director. Donna’s hard work and dedication has led the entire state of Louisiana into a month of recognition and celebration for the duration of June, which is officially ‘Nephrotic Syndrome Awareness Month’ state-wide. Behind the scenes, Donna’s hard work and perseverance came together to achieve this amazing feat. She explained the process of meeting and speaking to the right government officials is crucial in securing a proclamation and getting it passed. “Relationships are key to just about anything you do that you want to be successful at. So last year, when a friend of mine asked the Lieutenant Governor if he could find us a venue, not only did he say yes, but offered to serve as Honorary Chairman,” Donna said. Once she had built a relationship with the Lt. Governor’s office, she kept going back for more. NephCure CEO Josh Tarnoffand Donna met with Lieutenant Governor Billy Nungesser and his Senior Advisor, Josh McNemar, back in February 2019 to discuss NephCure’s role, the importance of finding better treatment options, and the upcoming Louisiana event, Boogie on the Bayou. From that meeting, Lt. Gov. Nungesser made several commitments to help bring awareness to NephCure, as well as raise money for its mission. “I’m like a dog with a bone! I won’t let go! If he [Lt. Gov. Nungesser] offers to do something, I write it down and follow through. He is unlike any politician I’ve ever met,” Donna exclaimed. Donna also mentioned Sr. Advisor McNemar’s key role in advising her on how to get a Resolution to the Louisiana House and Senate. He helped her bring further awareness of Nephrotic Syndrome to other key politicians in the state. She then took the liberty of asking Senator Gerald Long and Representative Charles Chaney if they would consider co-hosting a concurrent resolution. To Donna’s delight, they both gladly accepted. “Was it hard to do? No. I just had to be willing to do things out of my comfort zone and talk to people I don’t know. If I don’t ask the answer is no; however, if I do ask, I will get the occasional yes,” she said. Continuing the process, Donna forwarded the information to Senator Long. Once the Resolution was complete and ready to be presented in open Senate Session, Donna asked that she be allowed to invite someone who has personally gone through the struggles that come with a Nephrotic Syndrome diagnosis “The one thing that I truly believe is most beneficial above all others, is having patients tell their stories! It will—and does—make a huge impact on anyone listening. It makes all of this real and in many cases brings it closer to home. Sure, I need to know my stuff on NephCure, economic impact, how far the organization has come in less than 20 years, but real people soften hearts,” Donna explained. On May 22, 2019, Donna, Focal Segmental Glomerulosclerosis (FSGS) patient Nathan Roy, and his brother, Joshua, a NephCure Board Member, were invited to the Louisiana State Capitol Senate Chamber. Senator Long introduced Nathan and highlighted the struggles he has faced living with rare kidney disease for more than 20 years. Sen. Long also highlighted the remarkable accomplishments Nathan has made throughout his life while battling FSGS, as well as the extremely important role that NephCure plays in the fight to find better treatment options and care for these rare kidney disease patients As far as future plans go, by the year 2020, Lt. Gov. Nungesser has pledged he will take a National Resolution to Washington, DC; making the future for Nephrotic Syndrome awareness bright. Thank you to Donna for seeking out for this bold accomplishment and making it come to life. We are grateful and proud to have the month of June serve as Nephrotic Syndrome Awareness Month in Louisiana.