Your Advocacy at Work – New Funding for FSGS Research May 12, 2016 by Kylie Karley Since 2014, NKI and our dedicated community of patient advocates have been encouraging Congress to include FSGS on the Department of Defense’s list of conditions eligible for research funding through the Peer Reviewed Medical Research Program. Learn more about these efforts here. Directly as a result of our advocacy, FSGS was included on the list in 2015 and 2016. This new stream of grant funding gives FSGS researchers access to up to $278 million in grant awards. Last year was the first year that FSGS researchers were able to submit grant applications for this new funding stream and recently, the DoD announced which of those applications were recommended for funding. We are thrilled that five FSGS projects made the list! FY 2015 Discovery Award Suzie Pun – University of Washington FY 2015 Investigator-Initiated Research Award – Partnering PI Option Ali Gharavi – Columbia University Medical Center Simone Sanna-Cherchi – Columbia University Medical Center Suzie Pun – University of Washington Stuart Shankland – University of Washington We can’t wait to tell you more about the winning projects for 2015 and look forward to even more success in the 2016 cycle. In order to ensure that FSGS continues to be included as an eligible condition each year, we must continue to advocate. Stay tuned for more information about what you can do to help!
Apply to be an NKN Steering Committee Member! March 15, 2016 by Kylie Karley We’re looking to expand representation on our NephCure Kidney Network Patient Registry Steering Committee! Are you interested in moving research forward? Looking for a way to give back in a meaningful way? Interested in connecting with others impacted by Nephrotic Syndrome? NKN Steering Commitee 2015 The NephCure Kidney Network is a patient registry containing patient-reported information about living with Nephrotic Syndrome. The NKN is governed by patients, patient parents, patient advocates, clinicians, researchers and representatives from industry, all working together to advocate for patients and families. The group is also charged with ensuring that high quality data is being collected and utilized properly for the research community. This group, known as the Steering Committee, meets regularly (via phone) to discuss patient recruitment and retention, research priorities, and other topics relevant to the success of the NKN. The collective perspective of the Steering Committee members helps maintain a patient-centric focus throughout all the NKN-initiated activities. If you are interested, please contact; Chelsey Fix at cfix@nephcure.org or 610-540-0186 ext 19 Applications will be accepted until April 15th, 2016 Please consider the following criteria when applying: Nephrotic Syndrome patient, parent, or caregiver OR clinician that regularly interacts with NS patients OR researcher with strong interests in NS (from an academic institution or pharmaceutical industry) SC Members must be able to commit to a monthly conference call held on a weeknight. Occasionally, 2 calls may be held in the same month. SC Members must be able to use the technology associated with participating in a conference call Patient members must be enrolled in NKN Patient Registry SC Members must have an active email address and be willing to communicate via email regularly
NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness March 3, 2016 by Lauren Eva FOR IMMEDIATE RELEASE Contact Information: NephCure Kidney International Erin Russell erussell@nephcure.org NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness {Melville, NY, March 2, 2016} – NephCure Kidney International and Sydney Levine, from Melville , NY, will be MARCHing to Awareness for the month of March. Sydney, 15, rang the closing bell at the NYSE yesterday to kick off her month long drive to promnote awareness of chronic kidney disease. Sydney’s brother, Matthew, 12, has Focal segmental glomerulosclerosis (FSGS), a rare kidney disease for which there is no cure. MARCHing to Awareness is a campaign aimed at promoting f National Kidney Disease Awareness Month and will target a different activity each day of the month. Yesterday, March 1, Sydney spoke in front of the Suffolk County Legislature and rang the NYSE closing bell. “Academics aside, I wanted to express my admiration for Matthew in the way he conducts himself. In spite of his condition, his positive attitude never waivers. I cannot remember the last time I didn’t see him with a smile on his face. Many kids would use his condition as a crutch or an excuse; he appears to use it as a motivator. I, for one, am inspired by this. I hope this month is just a start to finding a permanent solution to what Matthew and other kids like him are going through,” Chris Regini, Matthew and Sydney’s science teacher. For more information, please visit www.nephcure.org or search #KidneyAwarenessMonth NephCure Kidney International is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure. ### [Best_Wordpress_Gallery id=”10″ gal_title=”#KidneyMonthAwareness”]
Use Your Voice to Find a Cure; Join the NKN Patient Registry February 24, 2016 by Kylie Karley If you are living with Nephrotic Syndrome, your voice needs to be heard. Only your voice can give the information (or the data) that researchers need to find a cure. At NephCure, we have an opportunity for you to use your voice to give your data to researchers that will find your cure for Nephrotic Syndrome diseases- the NephCure Kidney Network Patient Registry. Keep reading to see how the NephCure Kidney Network brings together your data, your voice, and your cure! Your Data: By logging on to www.nephcurekidneynetwork.org and completing surveys about health information, you make an important data donation that can help advance research in Nephrotic Syndrome. Your Data can also be used to match you with clinical trials for which you may be eligible. Your Voice: By joining the NephCure Kidney Network, you are joining a community that is demanding better treatments sooner, not later. Your Voice can tell researchers what is important for them to study. Your Cure: Making a data donation in the NephCure Kidney Network Patient Registry could inspire the next big idea in research. Data trends can be analyzed to help researchers figure out what to study. Finally, we can help you find clinical trials to participate in that may help find better treatment options and cures. How does it work? You spend about 30 minutes answering questions online (you will need to have some things on hand, like lab results). Researchers can then access the de-identified (anonymous) data and perform meaningful research analyses on the information that you have provided. The NephCure Kidney Network Patient Registry can also connect you to groundbreaking clinical trials for which you may be eligible. Get Started Now! Visit www.nephcurekidneynetwork.org to add your voice and your data to the NephCure Kidney Network and the search for a cure.
Countdown to a Cure: Chicago February 15, 2016 by wpengine The final countdown has begin to the NephCure Kidney International Chicago fundraiser. This inaugural event will be held on Friday, February 26, 2016 from 7:30 PM to 11:30 PM at Architectural Artifacts, Inc., 4325 N. Ravenswood Ave, Chicago, IL. Chicago natives Alap Patel and Amanda Schackart are co-chairing this event. “When Amanda first started having health issues, it felt like the world around us was crumbling. We didn’t know what was happening, and we didn’t know what to expect. Not knowing was the worst,” says Al. “When she was actually diagnosed with FSGS, our instant reaction was to learn as much as we can about the disease. The problem, we soon realized, is that so little is actually known about it. We soon learned about NephCure, and started attending their events and seminars. We found them incredibly invaluable, but it wasn’t enough. “This is why Amanda and I are co-chairing this committee for the inaugural Crusade for a Cure Gala, here in Chicago. More research needs to be done on FSGS and Nephrotic Syndrome. More people need to be aware of these issues, and the impact it has on millions of families across the US. We want to build a community in Chicago where families affected by these issues can know more and learn more from each other. We want to support a network of doctors who can discover more. We need more, we want more, and we want to give more. 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. “We are thrilled to finally bring this fundraiser to Chicago,” said Jayne Drew, Director for NephCure Kidney International. “The gala is in its 12th year in New York City and we believe we can have just as great of an impact here in Chicago.” TICKETS STILL AVAILABLE. Please join our crusade. Buy tickets or donate to the event online at support.nephcure.org/cdtac-chicago-2015. BIDDING NOW OPEN: Everyone can bid on the Silent auction items by texting CRUSADE to 52182 – shipping within the continental US.
Be Your Own Best Advocate February 15, 2016 by wpengine Hi, my name is Amanda, I’m an attorney, live in Chicago, and I have FSGS. When I was 26 I began gaining weight unexpectedly and a kidney biopsy a couple weeks later confirmed the diagnosis. Immediately I began steroid treatments, and responded well; however when we attempted to wean off the steroids, the symptoms returned. After another failed round of steroids, I temporarily lost my health insurance and was unable to see a doctor. Fortunately, I was able to eventually obtain insurance and then was quickly admitted to the hospital because the swelling was so extreme. I’ve been on Cyclosporine, Cellcept and now started Prograff and fortunately my kidney function has remained stable. Throughout my treatments, NephCure has been an important resource for me, grateful for the opportunity to interact with other patients and to talk to experts in the field. My friends & family think I am fierce – I won’t let anything stand in my way. Some people assume that a rare disease diagnosis would stop your life in its tracks. But I’ve learned that things that would have caused anger or provoked frustration in the past seem unimportant now. Life is way too short to spend fighting or being upset about the little things. My husband Al and I now spend time advocating, fundraising, and working tirelessly with NephCure to help fund the cure for FSGS. We know what we want and what we all want is a cure! We need more, we want more, and we want to give more. Won’t you join us in this fight? Sincerely, Amanda
Regional Symposium Series January 28, 2016 by Lauren Eva NephCure Kidney International, in conjunction with leading institutions throughout the United States, presents a series of four regional Nephrotic Syndrome symposia. These one day events will engage glomerular disease researchers, clinicians, other healthcare professionals and patient families to foster new collaborations, improve management of care and address current research issues. • Course directors vary by location • CME (Continuing Medical Education) accreditation is offered • Corporate sponsorship opportunities are available Dates for 2017 Symposia: San Francisco, CA Friday, September 22 Charlotte, NC Friday, October 6 Houston, TX Friday, October 13
Community Call Recording – A Unique Adult Experience December 28, 2015 by Kelly Helm Guest Speaker Dine Watson Historically, our adult community has sometimes felt neglected because of the attention that pediatric patients receive. NKI is working hard to offer more and better opportunities for our adult population. This webinar recording highlights the unique experience that adult Nephrotic Syndrome patients have while juggling their health and day-to-day life. Washington Post contributor and adult FSGS patient Bernadine Watson is a guest host. Watch A Unique Adult Experience here: https://www.youtube.com/watch?v=j-1d4NciOmo
Strength in Numbers – completing the picture one story at a time December 15, 2015 by Kylie Karley Puzzles can be frustrating! The more complicated the picture, the harder the puzzle. And nothing is more frustrating than missing puzzle pieces! Nephrotic Syndrome is an especially complicated puzzle. Why do some patients respond to steroids while others don’t? What role to our genes play in how these diseases progress? How come some people get FSGS as children while others are diagnosed as adults? Like puzzle pieces, patients with Nephrotic Syndrome are each unique and vitally important. We need every single piece of the puzzle to make the picture complete. Each patient story gives nephrotic syndrome researchers good information that will help us understand these diseases. Researchers have set up a variety of studies and databases to collect and organize these patient stories. NephCure Kidney International supports all of these efforts because each adds to the big picture. Our goal with this newsletter, is to help you understand the different efforts, what makes them unique, and how you can get involved. Cure Glomerulonephropathy (CureGN) The Midwest Pediatric Nephrology Consortium The NephCure Accelerating Cures Network The NephCure Kidney Network Patient Registry The Nephrotic Syndrome Study Network (NEPTUNE) *These efforts are all US-based. For more information about similar international projects, see the UK-based National Registry of Rare Kidney Diseases (RaDaR) and INSIGHT (Insight Into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics), a Canadian study of pediatric nephrotic syndrome. For frequently asked questions about getting involved with one of these projects, click here. Thank you to Hailey Desmond, Corinna Bowers, Tina Mainieri, Dr. Laura Mariani, Dr. Larry Greenbaum, and Dr. Jonathan Hogan for their help with creating this “Strength In Numbers” content.
It All Adds Up – A Doctor Explains “Strength in Numbers” December 15, 2015 by Kylie Karley We recently caught up with Dr. Jonathan Hogan from University of Pennsylvania who explained why he thinks it is important for patients to add their voices to consortia studies and patient registries. See below for our Q&A with Dr. Hogan! Dr. Jonathan Hogan from the University of Pennsylvania Q: How would you define consortia? JH: Consortia are groups of institutions, businesses and individuals that come together to achieve a common goal. In the case of health and medicine, consortia are often formed to promote the awareness, understanding, research and treatment of certain diseases. Q: There are several groups of researchers building this consortium model (and patient registries )- why is it important for all of these researchers to be collecting patient data? JH: Obtaining data is the most important step in research. Without data, researchers cannot answer questions that they have about the diseases they are studying. Patient registries are one of the most effective ways of obtaining data. This is particularly true for rarer diseases, for which finding patients and obtaining the data on how their diseases has affected them and responded to treatment (for example) can be very challenging. Q: Why should patients care about the consortia that are happening? JH: As the theme of this article suggests, there is strength in numbers. This statement is true for many reasons. The larger the amount of affected patients, the larger the effect on public health. This draws attention to the disease and the importance of getting behind research. With more patient data, more questions can be asked and answered about these diseases. There is only so much attention and resources (money) to be spread around in disease research. The more “visible” the disease is (through participation in research studies, registries, fundraising, advertising their disease and lobbying lawmakers), the more attention (and money) will be devoted to it. Q: How can patients get the most out of their experience while participating in a consortium? JH: Being engaged with the consortium allows patients to get the most out of their experience. In the age of the internet and social media, there are more options than ever for patients to get involved. This may include participating in patient registries, advertising about their disease and need for research through word of mouth and social media, and attending events in person that focus on their disease. Support groups also are a great way for patients to interact with other members of the community who are affected by these diseases and care about making a difference. Q: In the big picture, can you briefly describe how participating in consortia contributes to new therapies and treatment options? JH: Participating in consortia contributes to new therapies and treatment options by providing more data to both ask and answer questions for a specific disease. Without patients contributing their information and being aware of state-of-the-art research for a disease, it is impossible to move fields forward in the understanding and treatment of these disorders. Consortia provide a common arena where patients and researchers can convene to accomplish these goals. This is particularly important for rare diseases, for which finding enough patients to treat with new therapies is very challenging. Q: What do you see for the future of this “big data” being collected in consortium? JH: There is enormous potential in the collection of “big data”. Larger numbers of patients contributing their information allows for the use of novel approaches to the understanding and treatment of diseases. In the age of the internet and social media, consortia have a unique opportunity to collect and analyze data from patients worldwide.