August is Advocacy Month August 1, 2016 by Kylie Karley Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues. Background Members of Congress will be in their districts throughout the month of August. Legislators use this time away from Capitol Hill to meet with their constituents in their local offices and learn about the issues impacting the people they represent. Advocates for NephCure Kidney International can use this opportunity to schedule meetings with the local offices of their members of Congress to educate legislators about Nephrotic Syndrome and FSGS and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. NephCure will assist you with the rest. Taking action is easy: Inform NephCure of your interest in making a local congressional visit by emailing cfix@nephcure.org. NephCure can help you locate the contact information for the local congressional office near you and assist you with scheduling a meeting. Consider making a local visit as a group, with other patient families from your area or with your friends, family, colleagues, or neighbors. Review NephCure’s legislative agenda, and ask us any questions you have about the issues by emailing cfix@nephcure.org. Meet with the local office, tell your story, ask them for their assistance on key issues, provide them with the leave behind materials, and then report back to NephCure by completing this evaluation form. About the Issues Each year, NephCure outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This year, NephCure has outlined the following issues as part of our legislative agenda: Provide $38.1 billion in fiscal year 2019, a $2 billion increase Provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the branch of the NIH that would most directly support NS and FSGS research. Provide a proportional increase for the National Institute of Minority Health and Health Disparities (NIMHD). Minorities are disproportionately affected by NS and FSGS, and this branch of the NIH could provide specific funding opportunities and training programs to benefit the community. Support rare disease research at the National Center for Translational Sciences (NCATS). Continue to include FSGS as a disease eligible for study through the Department of Defense’s Peer Reviewed Medical Research Program As a result of this funding opportunity, over $2 million has gone to FSGS research The NKI community must continue to advocate in order for FSGS to be included every year Co-Sponsor the “Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. 2644)”. This bill is aimed at improving the lives of individuals with chronic kidney disease by supporting research that identifies and eliminates barriers for transplantation This bill allows individuals to retain access to private insurance This bill is promotes access to home dialysis, which is associated with higher quality of life and better health Finally, this bill pays particular attention to chronic kidney disease in minority populations and aims to improvement access to treatment for underserved areas This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. However, to be successful in your meetings you will not need to remember complicated political information, you just need to tell your story. The materials below can help you have a productive and effective meeting with your Senators and Representatives. Toolkit for Successful Meetings How To Guide for Meeting With Your Legislators NKI 2018 Legislative Agenda Advocacy Letter Template
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”]
Every gift has a story. November 23, 2015 by Lauren Eva Use new eCards to tell someone you love that you care about them.
Chicago is Walking for a Cure this Weekend! September 17, 2015 by wpengine Co-chair Sue Rogers walks for her son. The NephCure Kidney Walk returns for the 9th year to Chicagoland this Sunday, September 20th. The walk brings together Chicago 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 Centennial Park, 1776 W. Centennial Place, Addison, IL. Registration opens at 9 and the walk begins at 10 a.m. Music, food, and games will be held afterwards, plus fantastic raffle prizes, including a pair of tickets to the inaugural Countdown To A Cure Chicago fundraising gala themed Crusade For The Cure on Friday, November 6th at Architectural Artifacts at 4325 N Ravenswood Ave., Chicago. The walk is open to the public, but registration is encouraged in advance at Chicago Walk. The NephCure Kidney Walk is especially meaningful to Romeoville resident and walk organizer Sue Rogers, whose son has been dealing with Focal Segmental Glomerulosclerosis (FSGS) for over 11 years. “I love the support I have found from parents I’ve connected with through the walk,” said Rogers. “Some have been through so much already with their children, including dialysis and a kidney transplant. I admire their strength. Just being able to talk to another mom who understands what you are going through helps me maintain my sanity when I question myself how I’ll manage to handle it all.” Chicago native Aries Merritt won the bronze medal in the 110m hurdles in Beijing at the world track and field championships last month, with less than 20 percent kidney function caused by FSGS – days before receiving a kidney transplant. 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. Start your team today! Team fundraising is a great way to get your friends, family, co-workers and neighbors involved. Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. Cannot physically make the event? Maybe you have a wedding on walk weekend. Or your son or daughter has a soccer game. Maybe you’re moving to a new house. We get it. Fall can be a busy time. But remember just because you can’t make it to walk day, doesn’t mean you can’t keep the tradition alive and make an impact by fundraising in support of NephCure Kidney International. Leave your footprint as a Virtual Walker. Please join in the fun & fundraising and setup a Virtual Walk Team and share with your friends & family on social media. We need everyone’s involvement. You will still be able to earn the commemorative Walk T-shirt! Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. REMEMBER – You can still Fundraise for your Walk team AFTER the walk is over for the remainder of 2015. So it’s not too late! Share your Team Fundraising Page & Photos on Social Media! Make sure you share frequently your page and event photos on Facebook, Instagram, Twitter and with your email lists. Use the hashtags #Selfies4NephCure #NKIWalk #Chicago A special thank you to Chicago Walk Co-Chairs Sue Rogers and Julia Bacarella – We are thankful for all that you do! To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/Chicago or contact Jayne Drew at jdrew@nephcure.org
Atlanta NKI Walk Celebrates it’s 6th year September 26th. September 16, 2015 by wpengine Team Macy Ray The NephCure Kidney Walk returns for the 6th year to the Atlanta area, Saturday, September 26th. The walk brings together Atlanta 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 Thrasher Park, 93 Park Drive in Norcross, GA. Registration opens at 9 and the walk begins at 10 a.m. Music and entertainment will feature local band Fatback Deluxe. Food and games for the children will be held afterwards, plus fantastic raffle prizes and a silent auction. There is no registration fee, but teams are encouraged to raise at least $1,500, with a total event goal of $32,000. Walk volunteers Michael and Alisan Parnes are one of the families leading this event in honor of their sons, Zion and Donovan. Both boys were diagnosed with FSGS in 2009. “This disease caused Zion’s kidneys to fail when he was only 6 years old. He spent a year on dialysis and had a kidney transplant at 7 years old. Donovan is still living with this disease and our hope is that better treatments or a cure will be found so that he will never have to endure kidney failure and transplant”, says co-chair Alisan. “This is our 6th year walking in honor of our boys and the thousands of others affected by this terrible disease.” Basketball stars Alonzo Mourning and Sean Elliot both suffered from FSGS. Elliott became the first player to return to the NBA after a kidney transplant, in the Spurs game against the Atlanta Hawks in 2000. Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidneys and the cause is not known. FSGS is a leading cause of kidney failure in children. 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 want to thank all of our sponsors and volunteers, including Oxygen Financial, Gas South, Atlanta Braves, Fat Matt’s Rib Shack, and Fatbuck Deluxe. A special thank you to the wonderful team at the Roswell Junior Woman’s Club for their ongoing support and volunteers for the event. To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/atlanta or contact Jayne Drew at jdrew@nephcure.org
Watch the Demystifying Research Webinar! July 21, 2015 by Kylie Karley Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it! We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered! CLICK HERE TO WATCH THE WEBINAR
The Evolution of Alternative Medicine July 15, 2015 by Kylie Karley In today’s world, 1 in 2 Americans suffer from a chronic disease. Director of the Center for Functional Medicine, Mark Hymen, describes the current response to health issues as an “acute disease system for a chronic disease population.” This seems especially relevant to patients whose disease can be treated, but not cured, as is the case with patients of Nephrotic Syndrome. Are there better methods to treat chronic health problems? And if so, how can we improve these patients’ quality of life in a holistic manner—physically, mentally, and emotionally? Around the nation, there are currently 50 institutions, ranging from Harvard to Mayo Clinic, that offer integrative, previously known as “alternative,” treatments. These treatments include, but are not limited to, acupuncture, massage, nutrition counseling, and much more. So what exactly is integrative medicine? At the core of integrative medicine lies a central dogma of “wellness.” The idea of wellness is a more holistic approach to medical treatment, and particularly to the medical treatment of chronic diseases. With the term “alternative,” however, comes residual stigma that these methods are only the source of false hope, and false hope alone. Integrative medicine, therefore, hopes to escape from these negative preconceptions, bridging the gap between alternative approaches and scientific validity. In other words, taking therapies that once were known as alternative medicine and subjecting them to the scientific method as with any other evidence-based medicine. On a national level, this change in focus was coupled with a change in name; the National Center of Complementary and Alternative Medicine was transformed into the National Center of Complementary and Integrative Health. The center’s director confirmed this transformation, stating that the NCCIH had in fact redirected, and narrowed, its aim. When the organization first began, it pursued a wide variety of approaches. Now, however, it has begun to focus in on only the approaches that hold some form of promise and scientific worth. For instance, in the 1990s, one doctor was putting in around 750 stents a year for patients with high blood pressure. With the help of Dean Ornish, however, a leading physician in lifestyle medicine, the same doctor began taking very ill heart patients and teaching them yoga and meditation. The results were astonishing. There was a 91% reduction in chest pain in her heart patients. More so, this lifestyle change actually began to reverse plaque in her patient’s arteries. Still not convinced? In a five-year research study on Transcendental Meditation, there was a 48% reduction in heart attack, stroke, and sudden death. As one doctors puts it, “to me that’s medicine—meditation is medicine.” This relationship between mind and body can go both ways: physical health impacts mental health, and the reverse is true as well. When a patient’s mind influences a certain health outcome, this is typically known as the placebo affect. Even without a physical stimulus producing a certain response, there is a response nonetheless. In that regard, the placebo affect can, and maybe should, play an important role in the medical world. As told by Lauren Atlas, director of the NCCIH’s neuroimaging lab, “we’ve known for decades that the placebo affect can engage endogenous opioids—your body’s own pain-relieving substances—to fight pain even without any treatment.” This is another area of promise, worthy of future research, within the field of integrative medicine. With the help of the NCCIH, further research will be done on integrative medicine and its role in the future standards of care for those suffering from chronic illnesses. Want to read more? Visit: http://www.theatlantic.com/health/archive/2015/06/the-evolution-of-alternative-medicine/396458/
5th Grade Class Celebrates World Kidney Day! July 10, 2015 by Kylie Karley On World Kidney Day, a NephCure Kidney International staff member traveled to Stratford Landing Elementary School in Alexandria, VA to speak with a 5th grade classroom about Nephrotic Syndrome. They learned all about kidneys, Nephrotic Syndrome, and the brave patients that are part of the NephCure family. The kids are currently writing to “Pen Pals” to learn more about the journey that our patients experience. (If you are interested in having your child be a pen pal with one of the students, email Chelsey Fix at cfix@nephcure.org) The kids did some wonderful work decorating kidneys to help raise kidney awareness! Check out some of the kidneys below!
Genetic Findings from an NKI Funded Researcher June 5, 2015 by Kylie Karley In 2014, NephCure Kidney International and the ASN Foundation for Kidney Research awarded Dr. Heon Yung Gee with a Young Investigator Grant. Dr. Gee is a physician-scientist at Boston Children’s Hospital who focuses on the genetic causes of nephrotic syndrome. With NephCure and ASN support, he is conducting research on how mutations in KANK2 and ARHGAP4 cause defects in the proteins that cells use to communicate. Lack of communication causes problems with podocytes—the part of the kidney that likely plays a big role in causing nephrotic syndrome. Recently, Dr. Gee published an update on this research in the Journal of Clinical Investigation. Thanks to Dr. Gee’s research, the Hildebrandt group has added KANK 1, 2, and 4 to the genetic test used to influence the treatment of nephrotic syndrome patients. As of now, this test includes approximately 30 genes, which if mutated, are known to cause nephrotic syndrome. To learn more about genetic tests, stay tuned for an upcoming NKI monthly newsletter. Dr. Gee’s research has also led to new tests, which can be used to screen for drugs that may provide a treatment for some patients with steroid-resistant nephrotic syndrome. To learn more about Dr. Gee and other NKI-funded researchers, visit: https://nephcure.org/research/nephcure-funded-research/. To read Dr. Gee’s article in the Journal of Clinical Investigation, click here: http://www.jci.org/articles/view/79504.
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.