Texas Clay Pigeon Shoot Fundraiser- Saturday May 9th in Lindale June 15, 2015 by Lauren Eva On Saturday May 9th, 2015, the Texas Clay Pigeon Shoot held by Baits, Balls & Clays raised $12,000 for Nephcure! Practice shooting and dinner with a live band (Bo Brumble) was held on Friday May 8th. The shoot was held on Saturday May 9th. Check out the photos below: Christian Family with Chad Grubbs (far right) Ashley Christian (Olivia’s mom) and Olivia Christian with Chad Grubbs talk to the crowd about Olivia’s struggles with FSGS [Best_Wordpress_Gallery id=”7″ gal_title=”Texas Clay Pigeon Shoot”] About Baits, Balls & Clays: In 2012 a group joined together to find a creative way to host multiple events that would help donate to charity. They called themselves Baits, Balls & Clays and the charity they selected was Nephcure. In their first year, Baits, Balls & Clays held a golf and fishing tournament, followed by the addition of a clay shooting tournament in the following year. Through their first 3 years Baits, Balls & Clays managed to raise around $20,000, which they donated to Nephcure. In 2013, a special little girl named Olivia was selected as an honorary member of Baits, Balls & Clays, becoming the face of the organization. About Olivia: Miss Olivia is 4 years old and a victim of a rare incurable kidney disease called FSGS. She and her twin sister were adopted into a family when they were young, gaining a mother, father, and 3 older brothers to watch out for them. Unfortunately, a few months after the adoption, when Olivia was only 16 months old, she was diagnosed with FSGS. Her illness caused the filters in her kidneys to stop working, spilling proteins into her body and causing massive swelling. The swelling had dire consequences for Olivia: she stopped walking, talking, playing, eating, smiling, and eventually stopped breathing on her own. In order to stay alive, Olivia went on dialysis and life support. Olivia was fortunate enough to survive with the help of a fighting spirit, and many supporters praying for her. Eventually with the help of various medications, she was stable enough to return home. Before her 3rd birthday, Olivia had undergone 7 surgeries and 12 hospitalizations. She has taken over 40 different medications in an attempt to treat her illness and keep her stable. Unfortunately, due to the lack of research regarding her rare disease, Olivia would be more likely to survive the most common form of childhood cancer than she would ESRD (End Stage Renal Disease), which is a common fatal outcome for patients like Olivia with FSGS. With supporters, Baits, Balls & Clays can continue to raise funds for desperately needed research through the Nephcure Foundation, which is committed to giving 9 out of every 10 dollars raised specifically to research for FSGS and its less aggressive form, Nephrotic Syndrome. Olivia and her family
Featured Clinical Trial- May Newsletter May 29, 2015 by Kylie Karley Featured Clinical Trial DUET: Sparsentan in FSGS Purpose The DUET trial is an interventional study that will determine how effective the drug Sparsentan is at reducing the urine protein / creatinine ratio over 8 weeks. Who is Eligible? Males and females between the ages of 8 and 75 years old with biopsy proven FSGS, or a proven genetic mutation transplant. Click HERE to see the other criteria that determine who is eligible to participate. How Can I Participate? There are currently over 30 study sites across the United States that are actively recruiting patients! To see that list, click HERE. Don’t see a location near you? No worries! The DUET trial will reimburse you for any travel costs to a study site. All study-related health exams and medications will be provided at no cost. Click HERE to learn more about participating in the DUET Study. Click on the Clinical Trials Finder Map below to see what’s happening near you!
Q&A With Dyan Bryson from Retrophin May 29, 2015 by Kylie Karley Recently, we got a chance to chat with Dyan Bryson, the Patient Advocacy Director at Retrophin, Inc. – the pharmaceutical company that is sponsoring the DUET study for FSGS patients. We took this opportunity to ask Dyan why clinical research – and the DUET study in particular – is important for Nephrotic Syndrome patients. Keep reading to see our Q&A session with Dyan! NephCure Kidney International: Why do you enjoy/what inspires you about working in the pharmaceutical industry? Dyan Bryson: I first came into this industry thinking I would stay 3 years, that was almost thirty years ago. I simply fell in love with the industry and its potential to help people. I came in rather naively, and at one point I became completely fed up with the lack of focus on patients. I am now back in love as the industry is finally moving towards fulfilling its potential to really help patients, not just support its brands. I love being in an industry where companies that have awakened to putting the patient at the center of its business are also profitable – doing well by doing good. These companies can be examples to others that this can be done. We have realized that we need to support people after they have filled our prescriptions; we have to develop strategies to support their caregivers; we have to support people by realizing that the therapeutic area our drug may be managing is just one of a whole list of things a patient, a person, has to manage in their lives. NKI: What makes participating in DUET a unique opportunity for the NS community? DB: Participating in a clinical trial, especially DUET, is an opportunity to contribute to the knowledge and health of the community. Of course, I am biased, but as a patient advocate I know that if we truly have a drug that can help patients with this rare condition – a condition that has no existing therapy – it can help so many people in the long run. Participation allows us to collect data that may help other people avoid the current long term outcomes of end stage renal disease and transplant. Although we as the drug maker will profit, so will the community through better quality of life. If you participate you can contribute to bettering the health of others. NKI: Why is it so important for rare disease patients and their families to care about research? DB: Many times it is the family of, or person who has, a rare disease that brings that disease to the attention of researchers. Many times if that interaction did not happen there would be no awareness of the disease and, hence, no research. Rare diseases are not like diabetes – researchers, drug companies understand the impact of diabetes. Payers understand the impact diabetes makes on their bottom line as they pay the costs of diabetes management. All stakeholders have clear incentives to manage the disease better. But for a disease where there is low awareness there is little understanding of the impact on a person’s health, hence little understanding of why to do the research. Patients with a rare disease, and their care partners, are the experts on that disease as they manage it 24/7. They are the ones that can drive the understanding of the disease and interest in doing research on that disease like no one else. I still remember the first time that, as a sales representative, my company brought a patient in to talk about the therapeutic area for which we were about to launch a drug. We all had studied and been tested for months to be certified, to confirm we knew the area well enough to talk about it with the physicians we called on. Now, finally, we were at the launch meeting to get our marching orders and celebrate the launch – fun and work at the same time. So, the patient gets on the stage, we had no idea what we are in for. The patient told their story. Soon we were ALL in tears. That one patient helped us understand why were really there. We understood their day-to-day and now we were on a mission to help. Twenty-five years later I can still see that patient on that stage; that experience informs me every single day. That is the impact of a patient telling their story, motivating and inspiring those who can do something about the disease take action. NKI: What is your suggestion for patients that want to learn more and be more involved in clinical research? DB: I know it can be daunting even to think about participating in a clinical trial. You think you are going to be a guinea pig, I understand and so do many others. There is a tidal wave of information out there that can help understand how trials work and help people to understand the process. The US government has even issued grants to researchers all over the country to figure out how to better inform the public about clinical trial participation (http://www.nih.gov/health/clinicaltrials/index.htm) Certainly on the NephCure site (https://nephcure.org/wp-content/uploads/2014/08/Clinical-Research-one-sheet-9162014.pdf) Also, several healthcare advocacy groups have sites that contain materials in several languages to discuss clinical trial involvement: National Minority Quality Forum “Are you in” Campaign – http://www.nih.gov/health/clinicaltrials/index.htm National Medical Association – Project IMPACT – http://www.impact.nmanet.org/about NKI: What do you want a participant to know before they decide to volunteer for a clinical trial? DB: The managers of clinical trials are usually very good about providing access to information about their trial. Scour the site provided, read the materials you are given before you make a decision. Know that the managers of that trial have had to put the trial protocol, all trial materials through a review of a professional board that understands the therapeutic area for which the trial was designed. This board is called an Institutional Review Board (IRB). The purpose of the IRB is to ensure that all human subject research be conducted in accordance with all federal, institutional, and ethical guidelines. This IRB oversees the entire trial, meets at points throughout the trial and makes independent assessments to ensure the safety and well-being of the study participants. In other words, the drug company or other researchers are running the trial with considerable oversight. The study participant is not on their own.
Check out our Peer to Peer Programs! March 19, 2015 by Lauren Eva One of the most important things we do at NephCure is connect people to others experiencing similar challenges of living with chronic kidney disease. Whether it be understanding the complexity of Nephrotic Syndrome/FSGS, the side effects of medications, frequent trips to the nephrologist or navigating your way through labs and diets, it can be incredibly overwhelming. At NephCure, we understand the value of connecting patients and caregivers with others to share experiences, frustrations and, better yet, good news! That’s why we’re expanding our Peer to Peer Support Program. In addition to our online support community, NephSpace, we offer our Patient to Patient Connections (P2PC) program. P2PC is a worldwide organized network of patients and caretakers whose lives have been affected by the diseases causing Nephrotic Syndrome and FSGS. It is designed to connect individuals via email or phone based upon any or all of the following: diagnosis, symptoms, and complications, age of individuals or sometimes specific geographical area. Our volunteer patient/caretaker ambassadors are committed to offering support and sharing their experiences with others who are facing similar challenges. You can learn more or be connected with a patient/caretaker ambassador here https://nephcure.org/?p=1390. We encourage you to take time to make connections with others in similar situations as we know you will benefit greatly from the support and sharing! If you are interested in becoming Volunteer Patient/Caretaker Ambassador please visit https://nephcure.org/get-involved/become-a-volunteer/ or contact Kelly Helm at khelm@nephcure.org.
Legislative Action Alert March 17, 2015 by Lauren Eva On the heels of our very successful Advocacy Day, comes this Alert. Please take action before end of day on Friday, March 20 Request that House and Senate Members sign on to letters supporting FSGS research Members of the House and Senate have drafted letters urging their colleagues in Congress to support medical research on focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome (NS) through the National Institutes of Health and the Department of Defense. Contact your two Senators and your House Representative to ask them to sign on to the letters. If a large number of Members of Congress express support for research on FSGS/NS, federal agencies will respond by continuing to prioritize their FSGS/NS research portfolios. To determine your two Senators: Visit www.senate.gov, and select your state in the drop-down menu on the top-right corner of the webpage. Click ‘go.’ Your two Senate offices will appear with their DC office phone numbers and webpages. To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and a link to the webpage of your House office will appear. You may need to enter your full address if more than one Representative is listed. Action: Call your two Senate offices and your Representative’s office. Tell the person that answers the phone that you are a constituent. Ask to speak with the health staffer and deliver the message below. If you can’t reach the health staffer, it is OK if you deliver the message to someone else or to a voicemail. Ask if you can send a follow-up email and request an email address. Send a follow-up email based on the message below. Recommended Message – [brackets] indicate where to insert specific information: “I am a resident of [CITY]. [Cite any meetings you may have had with the office.] I am contacting you to request that your office sign on to a letter supporting research on FSGS. The closing date is March 23rd. [In the Senate: “The letter is led by Alex Graf in Senator Stabenow’s office”] or [In the House: “The bipartisan letter is led by Dante Cutrona in Rep. Costello’s (R-PA-6) office and Joel Richard in Rep. Deutch’s (D-FL-21) office.”] FSGS and the diseases that cause nephrotic syndrome are devastating kidney diseases. FSGS is a leading primary glomerular cause of end-stage renal disease. [Briefly tell your story as a patient, parent, caregiver, etc.] I hope you will sign on to the letter supporting FSGS research before March 23rd. Please keep my posted on the actions you take. You can reach me at [phone and/or email].” Thank you! Feel free to forward this information to friends and family members as well. Every call helps!
Advocacy Day 2015! March 16, 2015 by Lauren Eva Wow. I mean, WOW! The last two days are the reason I do Government Advocacy! We had 37 people there – comprised of 5 staff members, 1 board member, 14 different families, children aged 2-16, a Mayor and even parents whose son passed away from complications of a transplant. These are our constituents, these are the faces of NS/FSGS. I was so proud, excited, energized by these families who traveled (many from the west coast!) to be here, tell their story and STAND UP & BE COUNTED for their loved ones! We are so grateful and we thank each and every one of the following participants: Tamekia Bernard, Maria Bradley, Justine Byun, Gregory Byun, Betsy Calloway, Dylan Clancy, Pam Duquette, Lindsay Duquette, Matt Duquette, Richard Fissel, Wayne Hall, Ashlee Harrison, Zeke Harrison, Zoey Harrison, Terry Hauk, Steve Hauk, Lisa Hollomon, Matt Hollomon, Geni Hubbard, Jessie Hull, Jeff Hull, Genneia James, Jaylen James, Jordan James, Annmarie Naples, Anthony Naples, Cecilia Naples, Grace Naples, Kimberly Queen, Helga Queen, Kathleen Romanczuk, Rhoda Thompson, Manu Varma – Jessica Martin, Director of Program Operations, NKI [Best_Wordpress_Gallery id=”5″ gal_title=”Advocacy Day 2015″]
Celebrating World Kidney Day 2015 March 12, 2015 by Lauren Eva Kidney Health for All – that is this year’s theme for World Kidney Day. In celebration of this ideal, and recognition of everyone impacted by the many forms of Chronic Kidney Disease – especially our Nephrotic Syndrome and FSGS Community – we’ve collected some posts from around the web to inform and support YOU. We also ask that you take a moment to be extra mindful of the amazing organs your kidneys are, and the big job they have filtering the waste from our bodies and keeping us healthy. Help them out today with some extra water, a good diet, and some exercise. Keep reading for some helpful links and an infographic that puts a lot into perspective. Yoga for the Kidneys You may know that YogaJournal.com is a wealth of information for anyone who wants to learn more about yoga. Did you know they also feature poses by anatomy? Take a look at their Yoga Poses for Kidneys for a series of movements designed to improve kidney health. Want more? There’s also a video! Namaste. Make Staying Hydrated Fun with the Water Challenge! Keep track of your water intake with this handy printable water challenge log from pepperscraps.com, and stay hydrated every day. Your kidneys will thank you! #SUBCselfie Challenge! Speaking of challenges, have you heard about the #SUBCselfie challenge? Started by members of the NephCure Community, the challenge is simple: take a selfie or make a video about why YOU choose to STAND UP & BE COUNTED to fight FSGS and Nephrotic Syndrome tag it #SUBCselfie post it to your favorite social media site with each video, make a $5 donation to NephCure to help us continue the fight challenge FIVE friends to do the same Learn more from the founder of the challenge here! Chronic Kidney Disease Facts Infographic
The Silver Lining Found In Nephrotic Syndrome – A Story by Lauren Bentley (former NKI Intern) March 10, 2015 by Lauren Eva The summer before 8th grade, I began to experience extreme fatigue. No matter how long I slept at night, I could not keep up with my friends. I often woke up with swelling in my neck, face and eyes. Sometimes I vomited for no apparent reason. My parents had been taking me to doctors for years but nobody could pinpoint the cause of my symptoms. I was tested for a variety of diseases and visited almost every unit in the children’s hospital. Finally, we landed in the Rheumatologist’s office. She told us that nothing abnormal showed up in my blood work but to come back if my symptoms grew worse or I experienced swelling in my feet or legs. One night while I was at camp, our counselors told us to get ready to play capture the flag. I ran to put on my sneakers but no matter how hard I pushed my foot into my sneaker, it would not slip in. I looked down and realized the entire bottom half of my body, from my toes to knees, had swelled up like a balloon. The counselors and doctor on hand attributed the swelling to being out in the heat, walking around campus and eating salty foods. When I mentioned the swelling to my mom, she thought the same thing. However, after I returned home from camp, the swelling did not disappear. In fact, it stayed exactly the same. My mom made an appointment with my Rheumatologist, who ordered blood work immediately. Two weeks later, I found myself sitting on the examination table in a Nephrologist’s office. The blood work showed I had signs of protein spillage and kidney damage. The team of doctors suspected I had Nephrotic Syndrome, a rare form of kidney disease. I could not believe this was happening. I felt as though I did not belong to my body, and instead, was watching this unfold on a movie screen. I can only describe it as an out of body experience. I spent two days in the hospital after undergoing a kidney biopsy. The results confirmed I did in fact have a form of Nephrotic Syndrome known as Membranous Nephropathy. In everyday words, this meant I had a kidney disease and damage as a result of Lupus that went undetected for years. Lupus is an autoimmune disorder in which the body cannot tell the difference between good and bad cells. As a result, it attacks healthy tissues, such as joints and major organs. It is difficult to describe the feelings I had while receiving this diagnosis. Part of me was confused over all the medical terminology. Part of me was sad. Part of me was overwhelmed and angry that my body had failed me. But after hearing how the doctors would treat my disease, almost all of me became scared. Along with diet and activity restrictions, I was prescribed several heavy-duty medications. Prednisone was one of the medications that would give me the most side effects. As the doctor rambled off the side effects I grew increasingly frightened. She said I would have mood swings, low energy, an upset stomach, grow “chipmunk cheeks,” and gain as much as thirty pounds – all in the course of just a few weeks after starting treatment. I remember this like it was yesterday. After my doctor’s appointment, my mom dropped me back off at school. I did not want to show I was upset or worried, so I told her I wanted to go back to class. As I sat in my desk in the back of Mrs. LaFave’s English classroom, I stared straight ahead of me. She rambled on and on about the Masque of the Red Death and all these other Edgar Allan Poe pieces, but all I could hear was my doctor’s voice rattling off the symptoms of Prednisone. What would people think? I was on a heavy dose of Prednisone throughout my 8th grade year. Without fail, the Prednisone showed its nasty side effects. By November, I gained about 15 pounds, was always exhausted and had round, chubby, chipmunk cheeks. As I stood in front of the mirror, I did not recognize the person staring back at me. Going to school everyday was challenging. As I walked down the hall I heard whispers. Rumors circulated about why my appearance drastically changed in such a short amount of time. “Did you have some kind of weird surgery?” random students asked me. “What’s wrong with Lauren’s face?” they would ask my friends. I did not want to share my health problems with anyone. I was worried people would treat me differently if they knew about my disease. I did not want my teachers to feel bad for me and give me special privileges. I also wanted to appear strong for myself and my family. The last thing I wanted was my parents to worry about me. One afternoon, I sat in the cafeteria eating lunch with three of my girl friends. I looked up and noticed the girls sitting in the next booth were staring at me. One of them leaned over and whispered something in her friend’s ear. It was clear they were gossiping about me. This was probably my breaking point. I had experienced other incidents like this before since being on Prednisone. Girls, who never cared to give me the time of day before, asked me what happened to my face. A group of kids in my math class whispered about it constantly, as if I could not hear them. When I left class every second period to go take my medicine at the nurse’s office, kids asked me why I always left class. But it was something about this one particular incident that broke me. I held in my feelings all day. By the time I walked through the door at home, I could not take it anymore. I burst into tears. My mom held me and rubbed my back as I lay in bed. This was one of the first times in my life I felt completely shattered. It boggled my mind to think that my peers could be so critical of someone’s appearance when I had no control over it. This may seem weird to say, but during this time, I also realized I had been so blessed. My condition could have been so much worse than it actually was. I could have needed a transplant. My doctors could have put me on dialysis. I could have been admitted to the hospital for weeks instead of a few days. As I went to the hospital for my monthly checkup and blood work, I saw children who were hooked up to a million machines. Newborn babies were being poked for blood work. Children were battling cancer and fighting for their lives. I was still able to sleep in my own bed at night. I didn’t need to have different IVs pump fluids into my body. Instead, I just had to take some medicine. I could run around outside and go to a real school. My friends and I still hung out on the weekends. During this time, I was also showered by so much love and support. My parents were amazing. They made me special low-salt dinners. When I cried, they listened and wiped away my tears. My doctors went above and beyond their job description. They provided me with emotional support and hugged me after every appointment. My friends at school stood up for me when other students gossiped and spread rumors. My church family visited me in the hospital, sent cards and spoiled me with special treats. Looking back now as an adult, I am extremely grateful for this experience. It taught me so much about myself. I learned how to be disciplined to eat healthy, get enough sleep and take my medicine on time. I learned to listen to my body and identify when it told me to slow down. As of today, I still have Lupus but my kidney disease is in remission. I am thankful everyday for a healthy body that allows me to lead a happy, normal life. It also taught me life lessons. I never judge a person based on the outside or first impressions. Everyone has a story that has shaped who they are today. Until you have walked in their shoes, it is unfair to place judgment. During the teenage years where gossip spread like wild fire, I learned just how hurtful rumors can be. I learned how important it is to be kind to everyone, regardless of how they dress, speak, or who they hang out with. Today, I intern for NephCure Kidney International. I love interacting with patients, hearing their stories, and sharing my own personal experience with them. I realized this struggle was put in my life so I could share my story with other people. For those who are still struggling with Nephrotic Syndrome or FSGS, there IS light at the end of the tunnel. It may not seem like it at the time, but things do get better. Those chipmunk cheeks don’t stay round forever. The kids who may be gossiping or picking on you, won’t mean a thing in a few years. Nothing is ever as bad as it may seem at the time. You will realize this experience made you a stronger person.
National Kidney Awareness Month March 2, 2015 by Lauren Eva Each year 8,000 Americans are diagnosed with Nephrotic Syndrome, contributing to the millions currently living with some form of chronic kidney disease. It also means there are 8,000 more reasons each year for you to join NephCure in raising awareness and funds in support of researchers, clinicians, and the patients we all serve. The time to find a cure is now. March is National Kidney Awareness Month – for each one of the 31 days of this month we’re asking everyone reading this message here, on social media, or in their (e)mailboxes to STAND UP & BE COUNTED by volunteering, advocating on Capitol Hill, through donations, and helping to raise awareness. Make every day of Kidney Awareness Month count! We’re coming in like a lion to raise awareness, raise money, raise our voices…to STAND UP & BE COUNTED alongside each and every person and their loved ones battling FSGS. Won’t you join us? Some things you can do to STAND UP & BE COUNTED (#SUBC) this March: Join us in Washington on March 11 & 12 (World Kidney Day) to talk to YOUR representatives about allocating more funds for kidney diseases research Sign up to host or join an event on behalf of NephCure! You don’t need a special talent, just a desire to make a difference. Visit our Get Involved page for more ideas and to create or join an event near you. Take the #SUBCselfie challenge! Teenager Sydney Levine has challenged YOU! Sydney wants to give her brother Matthew the ultimate gift for his 12th birthday: she wants everyone to STAND UP & BE COUNTED alongside Matthew to raise awareness and money for FSGS. Sydney says it best in her video here. Join Sydney, wish Matthew a Happy Birthday, make a selfie video and call out your friends! Help Sydney reach 50,000 views by Matthew’s birthday March 31 and let this amazing boy know he has love and support. And Sydney…well, both of her parents are tireless advocates on behalf of ALL FSGS patients, and her father Michael Levine was NephCure’s inaugural Humanitarian of the Year. Check back often for more ideas throughout March, and beyond. Want to learn more? Subscribe to our monthly STAND UP & BE COUNTED Newsletter. Together we can find a cure!