Advocacy Alert! Ask your Senators to sign FSGS funding letter February 29, 2016 by Kylie Karley Contact both your Senators and ask that they sign on to Senator Debbie Stabenow’s (D-MI) letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2017 appropriations process (Urgent – Deadline for Signatures is March 11) Background Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You) As a result of grassroots outreach, the Senate has recognized FSGS as a condition eligible for study annually for a number of years. This support allows FSGS researchers to compete for nearly $278 million in federal research funding each year. Senators are currently working on the FY 2017 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. Being included on the list one year is no guarantee of being included again in the next year. At this critical time, please reach out to the offices of your Senators and ask that they “sign on to Senator Debbie Stabenow’s letter supporting the inclusion of “focal segmental glomerulosclerosis (FSGS)” in the DOD PRMRP’s eligible conditions list for FY 2017.” Click here to read the letter. Take Action Recommended: Copy and paste the email template below, add your info (where prompted) and send it to NKI’s Washington Representative Phil Goglas at goglas@hmcw.org . Phil will forward your e-mail on to the appropriate staff person in your Senators’ offices on your behalf. or Reach out yourself to the Health Legislative Assistant in the Washington, DC, offices of both your U.S. Senators and ask for their support. To identify the contact information for your Senators’ Health LAs, simply go to Senate.gov and select your State. If you call the office (the 202 number), the staff will tell you the name of the Health LA and let you leave a voicemail (you can use the message below as a script). E-mail is more effective, but the receptionist will not likely provide you with the Health LA’s e-mail address. If you would like to e-mail the Health LAs in the offices of your Senators, please contact Phil at goglas@hmcw.org. He will provide you with their name and e-mail address. Congressional deadlines are fast approaching, so you must reach out to your Senators this week (the first week of March) or early next week to have an impact. Email Template Dear Senator ____________, Senator Debbie Stabenow is currently circulating a Senate sign on letter in support continuing to include “Focal Segmental Glomerulosclerosis” (FSGS) in the list of conditions deemed eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) during the FY 2017 appropriations process. On behalf of FSGS impacted families across the state, please contact Sam Schuiteman in Senator Stabenow’s office at Sam_Schuiteman@stabenow.senate.gov or 4-4822 to join this important letter by COB Friday, March 11th. FSGS is a rare and devastating kidney disease that is a leading cause of end-stage renal disease (ESRD). Nearly 30,000 veterans suffer from ESRD and an additional 3,000 veterans are expected to reach ESRD each year with significant health disparities among African American due to variants of the APOL1 gene. In addition, researchers suggest there are new opportunities for investigating FSGS in the military population with respect to environmental exposures. More needs to be done to improve our understanding of the impact of FSGS among our military personnel and veterans. FSGS has been part of the PRMRP for some time, including FY 2016, and continued participation will lead to further scientific progress. [OPTIONAL: Briefly tell your FSGS story in 2-4 sentences] Thank you for your time and your consideration of this request. Sincerely, [Your Name] [Your Address]
Traveling While Taking Immunosupressants February 29, 2016 by Kelly Helm Traveling even under the best of conditions can be stressful. Add the complications associated with a compromised immune system, medical equipment and supplies, and multiple medications can make traveling impossible! Join us on Tuesday, March 8 from 8-9 PM EST for the next Ask an Expert Webinar: Traveling While Taking Immunosupressants. Hear from fellow adult patients and parent experts on how they prepare for and ensure traveling success. Register Here: https://attendee.gotowebinar.com/register/8007574231706259201
Rare Disease Day February 29, 2016 by Lauren Eva Rare Disease Day 2016 By Patricia Colbert February 29 is a rare day, only getting a place on the calendar once every four years. It has a sunrise, sunset, and lasts 24 hours like all the other 365 days of the year. Yet, since it is an abnormality, it is rarely spoken of when it is not leap year. It makes perfect sense that Rare Disease Day is observed February 29 (February 28 on non-leap years.) To those of us who have a family member with a rare disease, we understand what it’s like to feel forgotten at times. Our loved ones have life-threatening illnesses, yet they do not receive the same respect as patients fighting diseases that are widely publicized. We spend more vacation days in a hospital room than a hotel room. More of our time and income is spent on healthcare than recreation. Instead of enjoying novels, we read medical journals. Purchasing event tickets is always a gamble as they often go unused. Any type of excursion requires extensive, detailed planning with military precision. Yet people have never heard of our disease. We have sacrificed for years, even not exchanging gifts at times, to pay for healthcare costs and treatments to keep our loved ones alive. We are glad when we see families receive immediate support when they battle a well-known disease; we support and even chair fundraisers for these diseases for we understand the struggle. We mourn the loss of family and friends from these illnesses and will continue to support research for all diseases. We just feel completely left out at times. It is very isolating when people seem indifferent to the severity of a life-threatening illness. We witness an unending paradox as the same people who post ice bucket challenge videos and wear pink in October often show no interest in supporting members of their own community. We watch a school support better-known diseases yet not support their own student when she fights for her life. We see teachers publicly rebuke students for doctor-excused absences and not having every assignment complete upon returning to class after emergency hospitalizations. Children and Youth Services was even called to the school and home of a student for missing school due to kidney failure. An apology after seeing the doctor’s excuse did not undo the severe psychological damage. The student softly said that maybe it would have been better if she had lost all of her hair during chemotherapy or if she had used crutches when walking caused her unbearable pain. Some people seem to think that a disease can’t possibly exist unless they have heard of it or can physically observe it. We don’t mind explaining our disease; we welcome the opportunity to spread awareness as misdiagnosis almost cost us our child’s life. She gained 16 lbs. of fluid overnight, some on her lungs, and fought for her life 17 days out of town, completely isolated from her friends. Instead of a Welcome Back sign when she returned to school, she found herself blacklisted. Bloated from her disease, my sweet nine-year-old was teased, bullied, and even accused of being pregnant. This led to an eating disorder, depression and low self-esteem. Despite testing that placed her at the very top of her entire grade in Math & English, she was suddenly overlooked for academic opportunities because the school decided the advanced work she had previously been provided was too much for her to handle. Consequently, she struggled with boredom and low self-confidence. I watched every girl on her sixth-grade cheer squad run right past her with overnight bags, laughing as they loaded into a van. Still walking, my girl stated, as a matter-of-fact, “I guess there’s a party.” It was our new normal. I thought high school would be better, but the cliques were even worse and having a rare disease that affected attendance and deadlines still made a student ineligible for academic opportunities and honors, regardless of qualifications. Some people became quite hostile when my child’s health was a higher priority than school. Most didn’t believe that medications and chemotherapy treatments affected my child’s ability to think clearly, despite the research that confirms it. One teacher actually yelled at me on the phone so loudly that my girl came in from another room with a bewildered look on her face. She was further victimized as her grade in that class dropped dramatically as a consequence of the hostility. Most rare diseases and their treatments compromise the immune system. Colds and virus are easier to catch and take longer to recover, especially when some over-the-counter medications cannot be taken. An illness may even cause a relapse of the disease. We cringe when someone coughs on us. Most medications have severe side effects, such as: fatigue, nausea, brain fog, mood changes, and excruciating pain; in addition, they have not been thoroughly tested on children. Patients see different doctors in different cities as they must also be treated for side effects of the disease and treatments. The physical impact of a rare disease alone is overwhelming; the mental, emotional, social and academic impact is often heartbreaking. My daughter even had a near-fatal reaction to a treatment, resulting in an emergency ambulance ride out of town and a week in ICU as she battled serum sickness. She is running out of treatment options. Unfortunately, thousands of people are fighting rare diseases. It can take years for a diagnosis and several more years to find the right treatment, if at all. Most rare diseases affect children, who are forced to grow up years ahead of their classmates and face trauma worse than many adults. The best, most understanding friends my girl has are fighting their own rare disease. These children are amazing, strong and care about others in a way that sets them apart. The best of our youth deserve better. Rare diseases deserve the same respect as familiar diseases. A child with Nephrotic Syndrome like my daughter deserves to be cured as much as everyone else. Most rare diseases have no cure. In order to find a cure, we need more funding for research. In order for these children to be treated more humanely, we must educate the public. This February 29, please remember Rare Disease Day. Make a donation to fund research for a rare disease. Research a disease that is unfamiliar to you, especially if affects someone you know. Contact a person with a rare disease and offer to help with homework, a chore, errand, or just to listen. The disease may be rare, but awareness should not be.
Your Advocacy Creates Change – Living Donor Protection Act February 26, 2016 by Kylie Karley 2/26/16 – Because of your efforts on Capitol Hill, the Living Donor Protection Act of 2016 was introduced yesterday by Rep. Jerrold Nadler (D-NY) and Rep. Michael Burgess, MD (R-TX) in the House, and Sen. Mark Kirk (R-IL) and Sen. Kirsten Gillibrand (D-NY) in the Senate. This legislation promotes organ donation and protects the rights of living organ donors. It is made possible in part by YOUR action on Kidney Community Advocacy Day, a joint advocacy event with the support of 16 separate kidney organizations and led by the American Society of Nephrology (ASN).For many patients with kidney failure, a transplant can be the best form of kidney replacement therapy. But today, more people than ever are waiting for this life-saving measure: a patient is added to the kidney transplant wait list every 14 minutes. In 2014, there were 101,168 people on the kidney transplant wait list, but only 5,536 living donor transplants performed that year. The Living Donor Protection Act would increase the number of kidney transplants by eliminating pointless barriers to donation. This bill prohibits insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors. It also clarifies that living organ donors can use Family Medical Leave Act time to recover from donation surgery and maintain job security. This important legislation will allow more Americans to consider living organ donation and help countless people receive the gift of life. NephCure Kidney International strongly supports this bill and joins ASN and the National Kidney Foundation in urging members of Congress to support this bi-partisan legislation. Want to make sure this bill becomes law? Tell your Senators and Representatives why it’s important to you, and urge them to cosponsor it. You can find supplemental documents to send to your congresspeople here.
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