‘Go Team NephCure,’ Northwest Arkansas Soccer Team Helps Raise Critical Funds July 23, 2019 by Kylie Karley Three years ago, everything changed for Dawn and Steve Patafie. In 2016, their daughter, Peyton, was diagnosed with Nephrotic Syndrome. “The doctors told us that her condition was extremely rare,” Dawn recalled. Peyton responded to steroids on the first try, which ultimately put her into remission for a year and a half. “At that time, I thought Nephrotic Syndrome was a thing of our past. I never imagine it could slip back into our lives,” Dawn mentioned. But unfortunately, the Patafie’s nightmare came to life and in February 2018, Peyton experienced her first relapse. Afterwards, she was on and off steroids for over a year. “It was during those countless relapses that I started to feel helpless. One night when I was unable to sleep, I came across a Facebook group for parents who have children with Nephrotic Syndrome. It was through this group that I learned about NephCure,” Dawn said. Peyton’s condition is now managed with cyclosporine. “My daughter was extremely lucky to respond to steroids,” Dawn acknowledged. Dawn and her husband, Steve, turned their helplessness into a plan of action. The two are now giving back in a big way, dedicating their time and energy to the fight against kidney disease. Since Peyton and her brother, Rocky, both enjoy playing soccer, the Patafie’s put together the North West Arkansas (NWAR) NephCure Soccer Club. The team of young kidney warriors participate in local soccer tournaments to raise awareness and critical funds for NephCure Kidney International. “We put the NephCure team together so the kids could continue to play [soccer] in the summer with their friends, while spreading awareness about Nephrotic Syndrome. It seemed like a great way to have the kids involved in raising awareness while doing something they love as well. We educated everyone that joined about NephCure and explained to them why the organization was important to us,” Dawn said. Her husband Steve added, “It was an awesome feeling listening to 6 and 7-year-olds cheer ‘Go Team NephCure,’ on the sidelines. The kids and parents were all extremely supportive of our cause.” In addition to managing the NWAR NephCure Soccer Club, Dawn is Arkansas’ patient engagement lead for other parents whose children have a similar diagnosis. That responsibility came along with the opportunity to attend NephCure’s Leadership Summit this past March. “Since attending the Leadership Summit, I no longer feel alone as we deal with Peyton’s Nephrotic Syndrome. Meeting other parents that are going through the same things with their children was so comforting. I now have a network of people to reach out to that I didn’t even know existed,” she said. Dawn is also the founder of a Facebook group called ‘Arkansas Parents of Children with Nephrotic Syndrome’ where she establishes a local support system. She even met up with two of the moms in the group this summer. “We had a blast having our daughters meet. Both moms told me that my daughter was the first person that their child has met that also has Nephrotic Syndrome. This is also the case for my daughter,” Dawn mentioned. On top of the NWAR soccer team and the NephCure leadership role, Dawn and her family is hoping to start a new NephCure walk in Northwest Arkansas in the spring of 2020. “I hope that the Nephrotic Syndrome families leave our event feeling a sense of support and community that they may have not realized was around. I hope to spread awareness in our area to people that have never heard of the disease or NephCure before,” Dawn said. The Patafie’s selflessness incredibly enough doesn’t stop there, they are also NephCure Champions. The program is part of our network of grassroots community fundraisers, who fundraise locally and virtually to help support NephCure’s mission of finding better treatments for protein spilling kidney diseases. You can find their web page at give.nephcure.org/Champions. Many thanks to Dawn, Steve, Peyton, and Rocky Patafie for their tireless efforts in support of our community.
The Clinical Trial Collaborative Meeting: June 26, 2019 July 22, 2019 by Kylie Karley The objective of our 2019 Clinical Trial Collaborative Meeting was to push treatments for rare, protein-spilling kidney diseases forward. In an effort to find these new potential treatments, approximately 100 of the world’s top glomerular kidney disease researchers, doctors, US government officials, international representatives, patient advocates, and pharmaceutical companies met on June 26, 2019 in Washington, D.C. To kick off the day, a panel of adult patients and patient parents sat in front of industry leaders and succinctly explained their frustrations with the lack of a standard of care, including more children in clinical trials, etc. (These excellent panelists ended their session with a standing ovation from the crowd, by the way)!! We took a look at KidneyHealthGateway.com and other clinical trial education and awareness efforts of ours, and then separated our six work groups into breakout sessions where they discussed the impact and timeline of deliverables to come up with a realistic approach on how to implement these changes; ultimately help recruit for clinical trials. In the afternoon, a panel of international experts informed the audience on how we can build global collaboration outside of the United States. Panelists traveled from as far as the United Kingdom, Italy, France, and Germany. We concluded the day by devoting time for each of the 6 work groups to present their innovative ideas and encouraged conversation and questions amongst the room to make these deliverables even more focused and implementable. A successful meeting on all accounts; June 26th left many attendees very optimistic and motivated to continue their efforts to increase participation in clinical trials while ultimately helping find new treatments for Nephrotic Syndrome, FSGS, IgAN, and other rare kidney diseases. To keep the patient experience front and center during our Clinical Trial Collaborative Meeting, we wanted patients and their families from across the globe to have the ability to explain their frustrations and let drug makers, researchers, and the FDA know why steroids are simply no longer an option. This video is the compilation of the anecdotes and messages our community responded with, which was played throughout the entire meeting. A livestream of the entire day can also be found here.
A Mother’s Perspective on President Trump’s Executive Order for Advancing Kidney Care July 12, 2019 by Kylie Karley On Wednesday, July 10, 2019, President Donald Trump signed an executive order aimed at transforming kidney care for the more than 37 million Americans with kidney disease. The administration said it is the first kidney-focused executive order since the 1970s. The policy is intended to improve kidney care in three major ways: by emphasizing more effective and convenient treatments; making more kidneys available for transplant; and improving preventive care and education with the goal of reducing the number of people who develop end-stage renal disease by 25% by 2030. NephCure Kidney International and IgA Nephropathy Foundation of America each had patients, volunteers, and leadership represented at the historical meeting. Bonnie Schneider, NephCure’s VP of IgAN Affairs and Founder of IgA Nephropathy Foundation of America, attending the executive order signing. She explains, in her own words, the amount of work she’s accomplished to get to this moment and what the event meant to her. July 10, 2019 Today is a day I will never forget. Not only was it a historical moment, but as a mom of a child with kidney disease, one I had prayed for many years. Fifteen years ago, our son Eddie Schneider came home from school one day and said his urine looked like Coca-Cola. I was completely blind-sided by his comment and very afraid. After a hospital stay and many tests, our son was diagnosed with IGA Nephropathy, a rare disease where abnormal antibodies deposit in the kidneys. As a pro-active person I hoped for an organization to join to try and take my negative thoughts and turn them into positive action. But to my surprise, no such organization existed. That’s when my husband and I took things into our own hands and started one ourselves. It is now known as the IGA Nephropathy Foundation of America. In the past 15 years we have visited Capitol Hill countless times, advocating for our cause and asking for assistance with the ongoing issues and hardships we face every day due to Eddie’s diagnosis. We left many of those trips feeling a great deal of hope, only to seemingly fall right back into the same place we started. To our dismay, we didn’t really accomplish what we thought we had. But today that all changed. Today was different; it was the unforgettable day that made all of the previous Capitol Hill visits worthwhile. Oddly enough, today sort of crept up on me; it’s something that was a last-minute decision and a last-minute invitation. Not initially realizing the momentous occasion that was about to unfold, Carrie Enike (another ‘mom warrior’ and Campaign Director to the IGAN Foundation) and I made our way to Washington, DC from different parts of the country. Many thoughts raced through our heads and a lot of emotions stirred. As we met together at our hotel room in D.C., we planned our strategy for the following day. That included an early wake up call, as we were told the earlier we were there, the quicker we could get through security. So, the two of us ‘Mom Warriors’ did just that and were first in line to attend this historical meeting. Being first in line allowed us to be front and center in the third row, directly in front of what would be the signing of the executive order to transform our nation’s kidney disease care. Right in front of our eyes, President Trump was about to sign the executive order for a bill that we have been pleading on Capitol Hill with our congressmen and senators for years, As we waited for the announcement to begin, Carrie and I exchanged looks, immediately knowing what the other was thinking, “Are we reallyhere?” Anticipation was building and at last, the presidential song, Hail to the Chief, billowed through the meeting room speakers. Before I knew it, President Trump walked onto the stage and the room erupted into applause. Rather than cheering for anything political, the celebrations were for what was about to happen for all of us trapped in this kidney world of uncertainty. I cried as the President addressed every concern we have and gave us his plan on moving forward to achieve the outcome we all deserve. I was humbled with gratitude for my son and for all of my patients that are counting on me to help them achieve a better quality of life. As we watched the President sign the executive order and proudly hold it up for all to see, we cheered with all the others in the room. It was groundbreaking! Tears welled up in my eyes as I watched the moment unfold. I cried for my son and everyone that needs this executive order; I especially cried for the patients we’ve lost because this was too late. I also realized that I can’t change the what I have no control over, but I can keep serving the patients I have come to love. On my ride home, I had plenty of time to think of what had transpired in front of me. One of my first thoughts was to pray to God and thank Him for allowing me this opportunity to serve so many with kidney disease, as well as allowing me to have the nerve to do some of the things I do– such as today. I pray we will not lose any more patients in the near future, and I am grateful beyond words to all of those who have taught me along the way in the kidney space (believe me, there are hundreds of them). So tomorrow when I wake up, the journey continues. Even though the executive order was signed, the work on Capitol Hill is ever more important. We have to expedite this through and yes, once again meet with our congressmen and senators. As a mom of a child with kidney disease and as a Founder of the IGAN Foundation, I do believe this will be one of the first good night’s sleep I have had in 15 years. -Bonnie Schneider
Low-Sodium Fourth of July BBQ Recipes July 2, 2019 by Kylie Karley The Fourth of July is fast approaching, and now is the perfect time to start searching for delicious kidney-conscious dishes to make and bring with you to Independence Day festivities the weekend. Start off the day with an appetizer for party-goers to munch on before the main course. In order to satisfy your hunger while also remembering to look for low-sodium options, try this chicken fruit salad recipe. This colorful summer time dish is the perfect mix of protein and fresh fruits that will have all guests jumping for seconds. Chicken Fruit Salad Ingredients: 8 ounces small shell pasta, uncooked 3 cups cooked chicken 1-1/2 cups celery 1-1/2 cups seedless grapes 15 ounces canned mandarin oranges 3/4 cup mayonnaise Preparation: Cube cooked chicken. Slice celery and slice grapes into halves. Drain mandarin oranges. Cook pasta according to package, omitting the salt. Drain and rinse in cold water to cool. Drain well. In a large bowl, combine cooked pasta and all ingredients. Mix well to combine. Cover and refrigerate until serving time. Once everybody has had their chicken fruit salad and enjoyed some time in the sun, it is time to move on to the main course. This dish is a renal diet conscious take on a classic burger. Easy to throw on the grill and sure to be a crowd favorite. Make sure to also bring the add-ons, like lettuce and tomato, in order to get that well rounded taste. Lisa’s Awesome Burgers Ingredients: 1-pound lean ground beef 1 cup sweet onion 1 large egg 3 tablespoons Mrs. Dash®Hamburger Grilling Blend 4 hamburger buns Preparation: Preheat the grill. Finely chop the onion. In a large bowl, combine ground beef, onion, egg and Mrs. Dash®seasoning until all ingredients are mixed throughout. Divide ground beef mixture into 4 equal size patties Grill to desired temperature and doneness. Serve on hamburger buns. Add red onion, thin tomato slice and lettuce if desired. Let’s end it on a sweet note, shall we?! What better way to end this American holiday than with an American dessert staple– apple pie. This recipe is great for everybody to enjoy before they watch the fireworks, and equally as good for those who may have to watch their sodium and fat intake. This dish will certainly be a wonderful conclusion to your Fourth of July barbecue. Apple Pie Ingredients: 6 medium apples 1/2 cup granulated sugar 1 teaspoon ground cinnamon 6 tablespoons butter 2-2/3 cups all-purpose flour 1 cup shortening 6 tablespoons water Preparation: Preheat oven to 425° F. Peel, core and slice apples. In a large bowl, combine apple slices, sugar and cinnamon. Cover and set aside. In a separate large bowl, cut shortening into flour using a pastry blender. Add chilled water, 1 tablespoon at a time and mix until dough forms into a ball. If it does not, use hands to form a ball. Divide dough in half and roll out one piece, using a rolling pin and additional flour as needed. Place in a 9″ pie pan. Stir apple pie filling and pour into pie shell. Using 1 tablespoon pats, place butter all around pie filling, evenly dispersed. Roll out the other 1/2 of dough. Place on top of apple pie filling, making sure edges of pie are covered. Using a sharp knife, make four 1” cuts around the top of the pie crust for air to escape while baking. Place pie in oven on a jellyroll pan to catch juice from pie while baking. Bake for 50 to 60 minutes until crust is golden brown. We hope everybody has a happy and healthy Fourth of July!