Know your options. Talk to your doctor about clinical trials.
Today, Congressman Ted Deutch (D-Fla) recognized NephCure on the House floor for our work in advancing research for FSGS and Nephrotic Syndrome. He asked his colleagues to support increased NIH funding, which will help advance Nephrotic Syndrome research and better enable us to find a cure for these conditions.
We sincerely thank Congressman Deutch for his efforts to raise awareness of NephCure and Nephrotic Syndrome, and urge you to watch his speech below:
NephCure Open Access: Spotlight On Deborah Pollock, National Director of Advancement
Deb joined NephCure last fall, but she is such a natural fit within the NephCure family that it feels like she’s been here with us all along. We’re so grateful to have her on the team, and she’s already made a huge impact on our work. We spent some time with her recently to learn more about what brought her to NephCure and what her plans are for the future of NephCure’s fundraising.
NephCure Kidney International: You have a deep and varied history in the fundraising profession. Could you describe some of the roles that you lean on in your position at NephCure?
Deborah Pollock: I started my career in fundraising, gosh I can’t believe it—23 years ago—kind of by mistake. I fell into it. I started with a part-time, temporary fundraising position at the National MS Society. I dove right into it and did pretty well, so that by the end of the summer they had hired me full-time. That was my first full-time fundraising position. I then started managing walks and some of their other campaigns. Within about two years, I had become a regional manager, overseeing staff and events.
From there, I had similar roles but kept trying to continue to learn and grow. I’ve also worked for the American Diabetes Association, the American Red Cross, and March of Dimes. In those roles, I did almost everything from being an area manager to executive director for a region and also working in major gifts. Those roles led me to loving this field, continuing to learn, and having the ability the ability to manage events, staff, and volunteers all at the same time. It was all great experience.
As a manager or director, I’ve always been what I call a “coach player.” Not all directors play this kind of role: I would oversee the chapter or the area, but in addition, I also always had a few of the signature events that were my own. I think that helped me understand the role of those who are coordinating events and those who are on volunteer committees—by continuing to have to work in those roles has helped me to empathize with every step of planning an event.
In the nonprofit world, you really are a jack of all trades. No nonprofit has a ton of money where you’re hired to just play one role. Even if you’re coordinating walk sites, you’re still doing the communications, you’re still doing the marketing, you’re the recruiter, the sponsorship writer, the team-builder, the logistics lead. I’ve always had to do all of that, and it’s been a wonderful learning experience.
NephCure: You’ve been part of the team for close to nine months already. So you have quite a bit of time under your belt here. What has surprised you the most in your time at NephCure?
Deb: What has surprised me the most has been what this organization has accomplished with so few people. I look at all that we’re doing and have done, and I just can’t believe that this small team has accomplished it. That’s really been my biggest surprise. When I first started looking at this position and looking at the website, and all the different events and webinars, I thought to myself, “Oh this must be a big organization.” Then I realized that it’s really just a small group of passionate, intelligent folks working with great volunteers. That is really what has surprised me the most.
NephCure: What has been your favorite NephCure event so far?
Deb: That’s a hard one, because each event you go to where you meet patients and volunteers, you just love every one of them. I really enjoyed Countdown to a Cure NYC—how beautifully run it was and the folks who spoke and shared their stories. As far as a fundraising event, I really loved that. I also really loved the Los Angeles, CA Walk. They had a Lunch and Learn part of it that was really well done.
The other thing I loved was the NephCure Leadership Summit. But really, everything I’ve been to has been so meaningful and well-run, it’s hard to pick just one!
NephCure: What about the NephCure community inspires you?
Deb: Having been in this field for so long, at every nonprofit and every disease-related organization I’ve worked for, you meet the patients, and you meet the families, and you meet the volunteers, but I’m really not just saying this: I have never seen the level of passion among families and volunteers that I’ve seen here. Even just being on a committee phone call, they’ll spend time talking about the event, but then they’re all connecting on a personal level—because they’re all patients or parents and they enjoy having that time to connect together as well. I’ve been on hundreds of committee calls with other organizations, and even if there were patients on the calls, it was mainly about business. Here, you become a family. I’ve never experienced something like that at this level.
NephCure: What exciting plans do you have in mind for the future of fundraising at NephCure?
Deb: The most exciting plan we have is taking us to the next level. I’d like to see a future where everyone knows who NephCure is, and we grow our brand and our fundraising efforts and really become well-known. Everyone has worked so hard for 18 years to bring some great signature events and walks together, and now’s the time to bring a lot of these events to the next level and really shine a light on our brand.
NephCure: Can you think of any events that are run by charities that are not necessarily well-known, but the event itself becomes well-known and surpasses the awareness of the organization itself?
Deb: When I started with the National MS Society 23 years ago, I think there were about 400,000 people who had MS in the US at that time. So though it wasn’t necessarily a rare disease, it’s not something that millions of people had. They had started an event called the MS 150s—two-day bike tours of 150 miles each. I remember the finish line at those events, even if you were the last cyclist in, there was still the same amount of volunteers cheering you on, and a lot of them were patients. You’d see people in wheelchairs at the finish line. Every rest stop, every gathering point was integrated with with making the riders and volunteers feel great. They branded those events so well and became such experts in logistics, I’d say that 90% of the cyclists weren’t necessarily riding because they knew someone with MS. But because they made it such a wonderful experience and such a professionally-run ride, those events were able to bring MS into the public light a little bit more. Once the MS 150s started, they kind of catapulted awareness of the organization.
I think there’s an opportunity to make NephCure and Nephrotic Syndrome more well-known. And I’m excited to be here to help play a role in that.
It’s a pleasure and a privilege to welcome Deb to the NephCure family. If you’d like to speak with Deb, please feel free to leave a comment below, or send her an email at DPollock@NephCure.org. From all of us, welcome to the team, Deb!
“What Can I Do to Prolong the Life of My Kidneys?”
Read our expert panel’s answers this community-generated question.
Mindy Banks, MD
Rocky Mountain Pediatric Kidney Center
FSGS, or focal segmental glomerulosclerosis, is a diagnosis that is made based on kidney biopsy often after it is noted that a person has high amounts of protein in the urine, high cholesterol, and/or swelling. Hypertension and progressive kidney dysfunction can also be a part of the disease. FSGS is really a descriptive term where scarring is found in segmental portions of the some of the filtering units of the kidney, also known as “glomeruli”. Because it is a descriptive term, there are actually many different underlying causes, including immunologic (essentially “autoimmune” in nature, often responsive to medications that suppress the immune system), genetic, viral (such as HIV), obesity, severe prematurity with intrauterine growth restriction, and even related to scarring from other primary disorders, such as lupus. Because there is such a wide range of causes of FSGS, there are also varying approaches to treatment.
Often, medications such as prednisone or other steroids are first-line therapies. It is important to take these medications as prescribed and not miss doses because these medications can affect the normal functioning of the adrenal glands. Therefore, a person can become quite sick if doses are missed without their doctor knowing. Not taking medications as prescribed may also decrease their efficacy. Calcineurin inhibitors (tacrolimus and cyclosporine), are also commonly prescribed. These medications are time-sensitive and must be taken every 12 hours apart to achieve appropriate levels and not risk toxicity. These medications also have many significant interactions with food you may eat or other medications you may take. Other immunosuppressive therapies have been tried, including mycophenolate (CellCept), rituximab, plasmapheresis, LDL pheresis, and abatacept, each with its own side-effect profile. Being your own advocate and discussing options in detail with your provider is important to make sure you understand the medications you are taking, how to take them, and what the risks are. Without this knowledge, you may not be getting the medications’ full benefit and be putting yourself at unnecessary risk.
Non-immunosuppressive interventions are also important. ACE inhibitors (such as lisinopril or enalapril) or ARBs (such as losartan) are blood pressure medications that are also useful to help reduce the protein in the urine by preferentially decreasing pressure inside the filtering units of the kidneys. Statins, which are high cholesterol medications, can also be very helpful. Water pills such as Lasix/furosemide may also be necessary to control swelling.
Good diet and exercise are also important parts of the equation. Restricting sodium in the diet helps reduce the amount of diuretic that may be needed and thus, limit side effects. A low-sodium diet can also help with hypertension. Protein is not usually restricted if someone is spilling significant amounts of protein in the urine. Controlling obesity also limits the stress on the kidneys and can slow progression of the FSGS. Certainly, avoiding smoking is critical to the lifespan of any kidney.
Having an FSGS diagnosis can profoundly impact a person’s life. However, it is important to know that you have the power to make a difference in your health. It is important to work with your providers to come up with a healthcare plan that works individually for you. Find a team that you trust and communicate well with. Be involved and be your own advocate. Lastly, find a support group to help you through this. Treating your mental health is just as important as treating your physical health. You are not alone and you can do this!
Dr. Mindy Banks is board-certified in pediatrics, internal medicine, adult nephrology and pediatric nephrology. Her combined internal medicine/pediatrics training was at Nationwide Children’s Hospital in Columbus, Ohio. She continued her medical training in the Midwest with fellowship at Northwestern University Hospital and Lurie Children’s Hospital in Chicago. Her medical practice focuses on children and young adults with the whole spectrum of kidney diseases ranging from frequent urinary tract infections to hypertension, nephrotic syndrome, dialysis and post kidney transplant care. She lives in Denver, Colorado with her husband and 3 boys. Besides nephrology, her life is spent either with sticky fingers from crafting or baking or sitting sidelines at a soccer game.
Diane K. Jorkasky, MD, FACP
Having been in clinical research for 30 years as well as having been in practice in nephrology, I have seen as new medicines have come to make a huge difference in patients’ lives. Unfortunately, few of those medicines have benefited kidney disease. When I advise a patient on how best to manage their disease, I think about how I advise my own parents.
The first is to make sure you read and know as much about the disease as you can. You have to do your homework. But you have to be careful as there is a lot of misinformation out there, especially on the internet. I would turn to sources such as NephCure Kidney International or other patient advocacy organizations as they provide extremely important and correct information to patients. The patient with the disease is always first in their minds. Do not be afraid to ask your doctor questions! A good doctor always takes the time to speak to their patients, no matter how busy they are. Write down your questions and take the list with you when you see your doctor. If the doctor ignores your questions or dismisses them, I would look for another doctor.
The second thing is to ensure that you follow the instructions that your doctor recommends. All kidney diseases, regardless of cause, will get worse if your blood pressure is abnormally high, for example. Taking your blood pressure as prescribed and watching your diet is extremely important for patients with kidney disease and Nephrotic Syndrome.
Finally, it is important to ask your doctor about clinical trials that may be ongoing or are about to start for new medicines that could benefit your kidney disease. Many of the current medicines used in kidney disease have severe side effects, like prednisone. Do not assume that your doctor knows what new medicines may be available for use in a clinical trial. NephCure and some, but not all, disease advocacy websites may list the drugs, the studies and the nephrology practices in the country where trials are being conducted. The only way that old, poorly effective and very risky drugs can be replaced with good ones that truly make a difference in the disease is by studying them in clinical trials. There are now more drugs than ever being considered for the treatment of FSGS and other kidney diseases. I would encourage patients to think about exploring these opportunities. Your physician can guide you on this journey as well. Be inquisitive, as it can make a difference in your life.
Diane Jorkasky, MD, is Executive Vice President, Chief Medical Officer, and Head of Development at Complexa Inc. (Berwyn, PA), a patient-focused, science-driven, clinical stage biopharmaceutical company developing a novel class of compounds, Nitrated Fatty-Acids, for the safe and effective treatment of debilitating fibrotic and inflammatory diseases. She has over 30 years of experience in the pharmaceutical industry across all phases of clinical research and development for a broad range of drugs in multiple therapeutic areas. Diane currently serves on the Board of Directors for OSE Immunotherapeutics (Paris, France), the Scientific Advisory Boards of Sigilon (Cambridge, MA) and Alzheon (Framingham, MA) and the Strategic Advisory Board of BioMotiv. She is also a member of the faculty at the University of California at San Francisco and Uniformed Service of Health Sciences Medical Schools. She serves on the executive committee of the American Course on Drug Development and Regulatory Science. Diane has published over 100 peer-reviewed articles and teaches internationally on drug development. She received her MD from the University of Pennsylvania, where she also completed her nephrology fellowship. In 2016, she was awarded the Elizabeth Kirk Rose Woman in Medicine Award by the University of Pennsylvania. She holds board certifications in clinical pharmacology, nephrology and internal medicine. Diane obtained her BA in Chemistry from the College of Wooster, where she was honored with the Distinguished Graduate award in 2013.
Jenna Henderson, ND
New Paltz, NY
FSGS and Minimal Change patients from all over the world consult with our naturopathic clinic, Holistic Kidney. Many of them are looking for alternatives to medications or as adjunct therapy for when medications help somewhat but they are still not able to reach full remission. Naturopathic doctors are the only healthcare professionals with broad training in both botanical medicine and pharmacology. I can tell if a particular herb would work well with a patient’s current prescription medications. I don’t encourage patients to abruptly stop any medication, but over time, we may be able to reduce the need for some medications.
We recommend plant-based supplements and dietary changes to reduce kidney inflammation and proteinuria. We also address long term cardiovascular health and bone density issues for patients. The connection between Nephrotic Syndrome and low-thyroid hormones is often not talked about, even though many kidney patients report feeling chronically cold. This is something we address. We also consider chronic insomnia, which is very common with Nephrotic Syndrome. By looking at Nephrotic Syndrome from different perspectives, we are able to use natural medicine to reduce kidney stress and improve kidney function.
Dr. Jenna Henderson’s practice, Holistic Kidney, is dedicated to the unique needs of renal patients with an international clientele and patients on 6 continents. A kidney patient herself for over 25 years, she has experienced all stages of kidney disease firsthand. She is a graduate of the University of Bridgeport. Dr. Henderson has had several articles on kidney health published in Townsend Letter, Natural Medicine Journal, and NDNR. She has lectured extensively across the U.S. to naturopathic doctors, kidney patients and kidney professionals, and co-hosted the radio show Improve Your Kidney Health.
Dr. Henderson seeks to bridge the gap between mainstream nephrology and natural medicine. In her practice, she helps patients sort through often conflicting information to understand what is appropriate for their individual needs and stage of kidney function. She is often able to help patients delay the need for dialysis. For those already in kidney failure, she helps patients find optimal wellness with dialysis or a transplant. She holds a naturopathic license in the state of CT and has recently relocated to New Paltz, NY. For more information, visit www.holistic-kidney.com.
About the FIRSTx Clinical Trial
FIRSTx is a Phase 2 study testing the safety and effectiveness of an investigational drug called CXA-10 designed to treat FSGS without steroids. This study will see if CXA-10 can reduce proteinuria while maintaining stable kidney function in people with FSGS. Throughout the course of the study, researchers will measure how different doses of CXA-10 impact proteinuria and carefully evaluate the kidney related and other effects of CXA-10. The study is taking place at approximately 20 centers across the United States.
How To Contact a Study Center:
Animal studies suggest that CXA-10 appears to work by reducing inflammation in the glomeruli and helping to prevent scarring. CXA-10 has been evaluated in healthy volunteers. CXA-10 will be provided to study participants in the form of a pill taken once a day in the morning with food.
Win a Trip to Advocacy Day!
NephCure Kidney International will be traveling to Capitol Hill in Washington, D.C. on June 19-20, 2018 to meet with members of Congress and advocate for research funding. This two-day event is a great way to connect with other families while helping us fulfill our mission.
This year, we invite you to enter a contest to win a trip to Advocacy Day! We will provide transportation and lodging for you and one guest of your choice. Additional rules and instructions for the contest can be found below. We will be choosing five winners—could you be one of them? Good luck!
Create and submit either an essay (with your photo) or a video that answers the question “Why I Want to Attend Advocacy Day”
- Five winners will be chosen by a panel of judges and transportation and lodging expenses will be covered for 2 participants per winning entry
- Winners will be announced by May 4th
- Already registered for Advocacy Day? You can still enter the contest! Just follow the same instructions below to enter to win.
Rules To Submit a Video:
- Videos should be 3 minutes or less. Please make sure to state your name in the video.
- Email your video here by April 23rd. Then, send an email with your contact info to firstname.lastname@example.org.
Rules to Submit an Essay:
- Written essays should be 500 words or less and must include your photo
- Email your essay (and your photo) to email@example.com by April 23rd
NephCure Advocacy Day 2018 is made possible in part by support from Mallinckrodt Pharmaceuticals and Retrophin, Inc.
Additional Rules and Information (The Fine Print!)
NO PURCHASE REQUIRED TO ENTER OR WIN. VOID WHERE PROHIBITED.
INTRODUCTION. This Advocacy Travel Contest (the “Contest”) gives the contest winners the opportunity to win transportation to Washington, DC and lodging for 2 nights at the Holiday Inn, Washington, DC. The details of the prizes and how to enter the Contest are contained in these Official Rules.
TO ENTER. You can enter the Contest by submitting an essay with a photo or a video that answers the question “Why I Want to Attend Advocacy Day”
Five winners will be chosen by a panel of judges and transportation and lodging expenses will be covered for 2 participants per winning entry
Winners will be announced by May 4th
Already registered for Advocacy Day? You can still enter the contest!
Videos should be 3 minutes or less. Email your video here by April 23rd
Written essays should be 500 words or less and must include your photo. Email your essay (and your photo) to firstname.lastname@example.org by April 23rd
NephCure Kidney International (“Sponsor”) is not responsible for lost, late, incomplete, illegible, or misdirected Contest entries, or for any error, human, technical or otherwise, which may occur in the processing of Contest entries. All entries become the exclusive property of Sponsor and will not be acknowledged or returned.
By submitting an entry, you permit Sponsor to use your photo, name, and entry (video or essay) in marketing materials, social media posts, or anywhere they deem appropriate.
TIMING. The Contest begins at 12:00 am Eastern Time on April 9th, 2018 and ends at 11:59 pm Eastern Time on April 23rd.
ELIGIBILITY. The Contest is open to all Nephrotic Syndrome patients and caregivers residing in the United States.
AGREEMENT TO OFFICIAL RULES. Participation in the Contest constitutes entrant’s full and unconditional agreement to and acceptance of these Official Rules and to be contacted by telephone and/or email.
SELECTION OF POTENTIAL WINNER. Five (5) Grand Prize winners will be determined by a panel of judges, chosen by NephCure staff, among all eligible entries received. Sponsor’s decisions as to all matters related to administration of the Contest and selection of winners are final. All potential winners must comply with all terms and conditions set forth in these Official Rules, and winning is contingent upon fulfilling all requirements. The potential winners from the drawing will be notified by email or telephone on or about May 4, 2018. If any of the winners cannot be contacted, an alternate entrant will be selected in his or her place at random from all eligible entries received.
PRIZE. The contest winners (“Contest Winner”) will each be awarded transportation and 1 room for 2 nights at the Holiday Inn, Washington, DC. Proof of payment (receipts) will be required.
The Prize is subject to the following material conditions and restrictions:
All other expenses and costs, not expressly listed above, including but not limited to food, mileage, incidentals, applicable taxes, are the Winners’ sole responsibility. No refunds or credit for changes are allowed. No transfer of the Prize is permitted.
By entering, participants release and hold harmless Sponsor, its subsidiaries, affiliates, directors, officers, employees and agents from any and all liability for any injuries, loss or damage of any kind arising from or in connection with the Contest or receipt or use and/or misuse of any prize.
Sponsor reserves the right to cancel or modify the Contest if fraud or any other factor impairs the integrity of the Contest as determined by Sponsor in its sole discretion.
NephCure Kidney International
150 S. Warner Rd
King of Prussia, PA 19406
Governor Cuomo Proclaims March 27th, 2018 as Nephrotic Syndrome Awareness Day in New York State
Governor Andrew M. Cuomo has proclaimed March 27, 2018 as Nephrotic Syndrome Awareness Day in New York State. NephCure is excited to partner with Assemblyman Edward P. Ra of the 19th district for this momentous occasion. Read the full resolution here.
NephCure volunteer Marlene Botta met Assemblyman Ra at the 2017 Long Island, New York NephCure Walk. Together, they formed a plan for New York to recognize the seriousness of Nephrotic Syndrome and the progress that NephCure Kidney International has made towards finding better treatments and a cure for this chronic kidney disease.
Marlene, mom to Jackie, 16, says, “The most exciting thing about going to Albany is the awareness. My main goal is to be able to say ‘Nephrotic Syndrome’ and have someone know it, like they know other diseases. They may not know it as intimately as we do, but they don’t have to say, ‘Nephrotic what?’
Marlene adds, “NephCure has been a Godsend! It has given Jackie a sense of not being alone in this, but with a network of other families that we can garner advice and support from. Jackie has been active with girls her age she met through NephCure on social media. They raise awareness and tell their stories. Jackie gave me the reason to fight the illness and NephCure gave me the platform. Helping NephCure raise awareness makes me feel less helpless.”
NephCure is thrilled to share this opportunity and what it means for families living with the effects of Nephrotic Syndrome. A heartfelt thank you to our volunteers in New York who made this day possible.