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MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

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MCD and FSGS, two major causes of Nephrotic Syndrome, have aspects that resemble one another.

Dr. Suneel Udani reviews the similarities and differences between MCD and FSGS and discusses the age-old question: are these two diseases the same?

Dr. Udani also reviews current treatment options, the significance of precision medicine, how research is uncovering new factors that may be driving disease progression, and how current clinical trials may provide the key to stopping it all.

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Related Resources

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Plant-Based Diet and Kidney Disease

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Mental Health Patient and Caregiver Panel

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Newly Diagnosed Parents – Nephrotic Syndrome 101

Educational Materials

School Accomodations

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Focal-Segmental-Glomerulosclerosis (FSGS)

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Overview and Symptoms:

Focal Segmental Glomerulosclerosis (FSGS) is a rare kidney disease characterized by dysfunction in the part of the kidney that filters blood (glomeruli). Only some glomeruli are affected, but continued damage can lead to kidney failure.

Protein in the urine, which can be foamy (proteinuria)

Low levels of protein in the blood (hypoalbuminemia)

Swelling in parts of the body, most noticeable around the eyes, hands, feet, and abdomen (edema)

Weight gain due to extra fluid building up in your body

Can cause high blood pressure (hypertension) and high fat levels in the blood (high cholesterol)

Fast Facts


FSGS occurs more frequently in adults than in children and is most prevalent in adults 45 years or older.



African Americans are 5 times more likely to get FSGS in comparison with the general population


Every FSGS patient follows a unique journey.



Focal Segmental Glomerulosclerosis is one of the leading causes of End Stage Renal Disease (ESRD) in children



FSGS is associated with up to 20% of all new cases of Nephrotic Syndrome in children each year.

Treating Your Disease

Short-Term Goals

The short-term goal of treatment is to stop protein spillage completely (remission) or lower the amount of protein lost in the urine as much as possible.

Long-Term Goals

The long-term Goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function.

There are currently no FDA-approved treatment options for FSGS. The standard first-line treatment for FSGS is Prednisone, a corticosteroid.

How to Live With Your Disease

1

Following a low-fat, low-sodium diet will help improve your kidneys’ function and your FSGS symptoms.

2

Finding a nephrologist who specializes in FSGS is very important to your long-term health.

3

Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself.

4

NephCure Kidney International can help you connect with other patients and find support to manage your disease.

NephCure Applauds the Introduction of Federal Legislation to Improve Kidney Patient Access to Early Interventions, Improved Diagnostics & Access to Treatments

Washington, D.C., December 15, 2023 – NephCure, a leading national patient advocacy organization dedicated to accelerating research and finding better treatments for rare kidney diseases, today applauded the introduction of the New Era of Preventing End-Stage Kidney Disease Act H.R.6790  in the U.S. House of Representatives. The legislation is championed by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL) and represents a crucial step forward in our nation’s efforts to address rare kidney diseases through research, better diagnostics, and physician and patient education.

The New Era of Preventing End-Stage Kidney Disease Act (“New Era Act”) is bipartisan federal legislation that will improve outcomes and quality of life for hundreds of thousands of Americans living with rare kidney disease (RKD) and their families. This legislation will support early intervention, improve access to better treatments, and reduce the physical, psychological, social, and economic impact of RKD through research, better diagnostics, and physician and patient education. The legislation will help mitigate the burden of rare kidney diseases on patients, families, and the health care system, laying the foundation for a new paradigm of proactive and effective kidney disease care.

“Our life-saving legislation will help remove diagnostic and treatment barriers for many patients suffering with a rare disease,” said Congressman Gus Bilirakis. “Through the establishment of Rare Kidney Disease Research Centers of Excellence and increased provider education efforts, we will empower providers to better identify the signs and symptoms of rare kidney disease, which will lead to improved treatment options and better patient outcomes.”

“Far too many people living with rare kidney disease have trouble finding specialized care providers. Increasing awareness and education is crucial to caring for rare kidney disease patients, which is why I’m so proud to introduce the New Era For Preventing End Stage Kidney Disease Act. This legislation will make critical improvements to the way patients with rare kidney disease, especially those in underserved communities, access and receive care,” said Rep. Sewell.

“NephCure commends Congressman Gus Bilirakis (R-FL) and Congresswoman Terri Sewell (D-AL) for championing the New Era of Preventing End-Stage Kidney Disease Act and efforts to see a future in which improved diagnoses, access to treatments, and patient empowerment converge to reshape the trajectory of rare kidney diseases,” said NephCureCEO Joshua Tarnoff. “This bill can change how we take care of rare kidney disease patients through earlier detection and access to the right treatments, providing rare kidney disease education opportunities to doctors and patients, and allocating money for research. We are proud of the essential contributions the rare kidney disease community played in the development and introduction of the New Era of Preventing End-Stage Kidney Disease Act. We are committed to continue working alongside Congressman Bilirakis and Congresswoman Sewell to pass this important legislation in the 118th Congress.”

The New Era Act: A New Approach to Improve the State of Kidney Care 

  • Reduce Kidney Failure. Mandates the U.S. Department of Health & Human Services (HHS) to evaluate treatment methods that would delay or eliminate the need for dialysis and transplant and provide legislative recommendations to Congress to support its findings.
  • Close the Gap for Underserved Communities. Directs HHS to make recommendations that would improve care in communities that have disproportionate rates of RKD. HHS will study a range of issues relating to early intervention, testing, and treatment, including access to kidney doctors, patient trust of their health care provider, and the utility, impact, and barriers associated with genetic testing.
  • Advance Research and Standard of Care. Creates regional Centers of Excellence on Rare Kidney Disease Research at the National Institutes of Health (NIH) which will support research, public awareness, and resources which could lead to innovative, less invasive treatments and possibly a cure for rare kidney diseases.
  • Enhance Provider Education. Establishes nephrology fellowships and provides continuing education and primary care training on RKD diagnoses and treatment. This training will enhance physician knowledge and increase the number of experts available to patients.
  • Empower Patients & Communities. The New Era Act will support public information and patient education campaigns, promoting informed communities and empowering patients to take charge of their health care journey.

Read the full text of H.R.6790 by clicking here.

NephCure encourages all of its community members to take action now by urging their Members of Congress to support the New Era legislation.

By the Numbers: The State of Kidney Care

  • Top 10 leading causes of death in the U.S. include kidney disease.
  • One in seven adults live with chronic kidney disease.
  • Nine in ten adults with chronic kidney disease are unaware of their condition.
  • The incidence of Focal segmental glomerulosclerosis (FSGS), a rare kidney disease, is around 5 times higher in Black patients when compared to white patients.
  • The annual cost for Medicare to treat kidney failure is $124.5 billion, which is driven by rare and chronic kidney disease.
  • Patients on dialysis spend around 12 hours a week connected to medical devices.

About NephCure

NephCure is a leading national patient advocacy organization dedicated to empowering people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney disease.

Global Collaboration at PARASOL Project Enhances FSGS Clinical Trials and Hope of New Treatment Options

On December 9, 2023, researchers, doctors, regulators, and patients from across the globe met in Washington, D.C. at the Proteinuria and GFR as Clinical Trial Endpoints in Focal Segmental Glomerulosclerosis (PARASOL) Project to discuss developing biostatistical models that could help with the design of clinical trials and aid subsequent regulatory approval of new treatments for FSGS.

FSGS is a challenging disease to study because of the diverse patient population who experience different symptoms, response to treatments and rates of progression.

Two important things doctors measure are protein in the urine (proteinuria) and kidney function (eGFR). But these can fluctuate a lot in FSGS. At this meeting, the group discussed how to account for this variability in their statistical models of disease course.

PARASOL project attendees also considered what outcomes the models should predict, like kidney failure. Linking changes in proteinuria or GFR to these outcomes could help identify new treatments more quickly.

“We recognize the urgent need for innovative additonal approaches to study FSGS. As we navigate the complexities of this challenging disease, the collaboration among global experts is key. By developing precise mathematical models, we aim to not only categorize patient groups more effectively, but also better predict outcomes like kidney failure. The entire PARASOL team is committed to providing regulatory agencies and drug companies data driven and feasible tools for better clinical trials and testing new FSGS therapies,” Josh Tarnoff, NephCure’s CEO, said.

Participants agreed that to achieve these goals, they would need to bring together research datasets from all over the world to make sure that the models work for all patients with FSGS. By reviewing data, they hope to make decisions to start building initial models.

Their models aim to provide a practical tool for drug companies to design clinical trials that could test new FSGS therapies and improve options for patients.

The PARASOL project is sponsored by NephCure, International Society of Glomerular Diseases, National Kidney Foundation, and Kidney Health Initiative.

There are plans for researchers and doctors to attend a follow up PARASOL project in June 2024, and to present project outcomes at the American Society of Nephrology project in late 2024.

If you would like to get involved further with the PARASOL project, or have additional questions, please direct all inquires to info@nephcure.org.

Potential FSGS Treatment Option To Be Tested In Phase 3 Clinical Trial

Potential FSGS Treatment Option To Be Tested In Phase 3 Clinical Trial

Early in March, Retrophin, Inc. announced plans to launch a phase 3 clinical trial to evaluate a potential therapy for FSGS patients. The therapy, called Sparsentan, successfully completed a phase 2 clinical trial in 2016 with promising results. The phase 2 clinical trial, known as the DUET Trial, showed a significant decrease in proteinuria for patients that received the therapy, and a greater proportion of patients that received Sparsentan during the trial reached partial remission.

Retrophin plans to launch the phase 3 trial in the second half of 2017. Phase 3 clinical trials are meant to demonstrate the effectiveness of a drug to determine how valuable it may be in clinical practice. It is the last step of research before a drug becomes approved by the FDA for clinical use.

The company is currently working with the FDA to approve the protocol for the clinical trial, which includes using the reduction of proteinuria as an endpoint to demonstrate the therapy’s effectiveness. If approved, Sparsentan would be the first FDA-approved drug for FSGS patients.

NephCure will be working closely with Retrophin to bring awareness to this clinical trial and help bring the patient perspective to their research.

To learn more about Retrophin, Inc. and Sparsentan, click here.

To learn more about ongoing studies, click here.

Q&A with Dr. Kopp of the NIH

picture- KidneyWordCloudDr. Jeffrey Kopp is a physician and researcher who focuses on FSGS and related diseases. He currently leads a group in the kidney disease section (officially called the National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK) of the National Institutes of Health (NIH). Dr. Kopp is also working on a new clinical trial for FSGS, MCD, and MN patients at the NIH headquarters near Washington D.C. We had the awesome pleasure of sitting down and catching up with Dr. Kopp about his fascinating job and new clinical trial. Keep reading to learn more, and read about some of his other research projects here. 

Interview highlights:

  • Dr. Kopp works at the National Institute of Health’s kidney branch, where he studies glomerular diseases such as FSGS and MCD. He also serves as Captain for the United States Public Health Service, and has been deployed to help with medical care during natural disasters.
  • Dr. Kopp is leading a new clinical trial for FSGS, MCD, and MN patients at the NIH studying a compound called ManNAc as a treatment option. 
  • ManNAc is a sugar that occurs naturally in your body. Another researcher at the NIH found that mice without ManNAc developed MCD, and adding ManNAc to their diet was helpful in treating it. Therefore, it may be effective at treating MCD, FSGS, and MN in humans (Dr. Kopp describes the full mechanism below—make sure you read the article!)
  • This study requires people to stay at the NIH for 11 days total, but it can be split up into 2 trips. Luckily, there is a lot to do to pass free time you may have at the NIH, including movie marathons, exercise programs, an art gallery, and an in-house business center.
  • Learn  more about taking part in the study by clicking here or contacting Emily Brede, RN at emily.brede@nih.gov

Full interview:

NKI: What is your job at the NIDDK?

Jeffrey B. Kopp, M.D.
Jeffrey B. Kopp, M.D.

Dr. Kopp: I am fortunate to lead a translational research group at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is part of the National Institutes of Health. Our mission is to develop a better understanding of the disease mechanisms responsible for focal segmental glomerulosclerosis (FSGS) and to develop more effective and less toxic therapies.

I also serve in the United States Public Health Service, with a rank of Captain. My primary mission at NIH is to carry out basic and clinical research in FSGS. I also deploy for public health emergencies, such as natural disasters. Thus, I participated in the medical response to Hurricanes Katrina and Ike.

SIDE NOTE: What is NIH?

Dr. Kopp: The NIH is a federal biomedical research facility located in Bethesda, MD. The campus includes a 240-bed Clinical Research Center and extensive outpatient clinics. Every patient who comes to NIH participates in a research protocol. Some protocols involve novel treatments and other protocols involve giving samples for research. NIH physicians may give advice about standard therapies that can be used. There are no charges for any medical care provided by the NIH Clinical Center.

NKI: What do you enjoy about CKD research?

Dr. Kopp: CKD, and particularly glomerular diseases (such as FSGS), are incompletely understood, and the available therapies are not ideal. I like the challenge of understanding and treating these diseases, and most of all I like the opportunity to improve the lives of patients with these conditions.

NKI: The newest clinical trial for FSGS, MCD, and MN patients at the NIH is looking at MaNAc as a treatment option. Why did you decide to study MaNAc?

Dr. Kopp: A colleague at NIH developed mice unable to make ManNac. She found that these mice developed glomerular disease soon after birth. This disease resembled a human glomerular disease, minimal change disease. Providing extra ManNAc orally to the mice cured the kidney disease. This prompted the question: can we use ManNAc to induce remissions in our patients?

Chemical Structure of ManNAc

NKI: What is ManNAc?

Dr. Kopp: Perhaps the word sounds to you like manna, the food the Israelites found in the desert and that helped sustain them. There is a tree in Europe that exudes a sweet white resin, similar to the sap of the sugar maple, and people who knew the Bible story called the tree the manna tree. A chemist found a distinctive and novel sugar in the manna resin, and he called the new sugar “mannose”.

NKI: Does ManNAc occur naturally in the body? Is it found in food?

Dr. Kopp: ManNAc is a natural product and essential for good health. Our food does not contain much ManNAc. Our bodies make ManNAc, which is converted in our cells to mannose. This in turn is converted to sialic acid, which is put on many proteins. All of these are sugars, but they differ from glucose in that they are not related to diabetes and they are present in very small amounts, so that they do not add calories in the diet.

NKI: What is the reason for believing that ManNAc might be useful in treating glomerular diseases?

glovesDr. Kopp: Podocytes are cells on the outside of the kidney glomeruli and serve to prevent plasma proteins from leaking into the urinary space. Many patients with glomerular diseases have lost sialic acid from the proteins on the podocyte. We think that providing extra ManNAc might promote the return of sialic acid to podocyte proteins and that this might improve podocyte function. We see some evidence in mouse models of FSGS that supplemental ManNAc in the diet helps treat these mice.

NKI: What is involved for patients in this study?

Dr. Kopp: Patients will provide their medical records for review by the NIDDK team. We also review the kidney biopsy materials from past kidney biopsy. No kidney biopsy is done as part of this study. If patients appear to qualify for the study, they will come to NIH for an outpatient visit for evaluation and to discuss study participation.

NKI: Is travel to NIH paid for?

Dr. Kopp: Travel to NIH can be arranged and provided by NIH. If overnight accommodation is needed, NIH can provide this also.

NKI: Why are patients required to stay at the NIH during this study?

NIH Headquarters
NIH Headquarters

Dr. Kopp: The study requires being an inpatient for 11 days, either as a single stay or as two stays of five and six days. The reason for the inpatient stay is allow frequent sampling of blood and urine and for safety, to be sure there are no side effects.
NKI: What can patients do with any “free time” during the study? How much free time do you expect patients to have?

Dr. Kopp: During the first five days, there are frequent time points for sample collection. During the second six days, samples are needed at 8 am and 8 pm. There is extensive free time that patients can use as they like.

There are many activities that can help pass the time at NIH

• Patient Computers combination television and computer (with Internet access) at most patients’ bedsides to provide access to games, web browsing, and personal e-mail via the Internet

• Patient Library has more than more than 5,000 books, including a selection of current best-sellers, reference, foreign language, large-print, picture, and audio books

• Clinical Center’s Fine Art Program has more than 2,000 works of art. Most artwork remains on permanent display throughout the hospital, but there are six galleries on the first floor that change every eight weeks. A walking tour is available to assist patients, caregivers and visitors in their enjoyment of the artwork on display.

•Recreation Therapy programs include:
o Arts and crafts
o Music
o Games and sports
o Social events
o Exercise
o A large selection of DVD movies
o Instruction in coping skills such as relaxation, enhanced communication, and stress management

• Spiritual Care Department offers Catholic, Jewish, Islamic, and Protestant services in the interfaith chapel

• Business Center has four PCs and four MACs (all with Internet connection) as well as a combined printer/copier/FAX and telephones are available.

NKI: Who can participate in the ManNAc study?

Dr. Kopp: We are recruiting adults (age ≥18 years) with a primary glomerular disease, including minimal change disease, FSGS, and membranous nephropathy, and with nephrotic range proteinuria (urine protein/creatinine ratio > 2 g/g).

Exclusion criteria include having diabetes mellitus and receiving pulse therapies, such as rituximab. Monetary compensation is provided.

NKI: How do I get more information about the study?

Dr. Kopp: The study, like all clinical research studies, is described at clinicaltrials.gov.
You also contact the study research nurse, Emily Brede, RN at Emily.brede@nih.gov

Advocacy in Action – Nephrotic Syndrome Research Funding Support Letters

P1130101Thank you to all of you who wrote to your Senators and Representatives asking them to support funding for Nephrotic Syndrome and FSGS research! Through your efforts, appropriations letters were sent to relevant subcommittee chairs in the House and Senate encouraging them to increase funding for these diseases. Four Senators signed the Senate letter and 27 Representatives signed the House letter.

Background

Each year, Congress decides how much federal funding should be applied to medical research activities and provides guidance to the National Institutes of Health (NIH) on what conditions legislators are particularly interested in. Recently, Members of Congress have been deciding on the level of NIH funding for fiscal year (FY) 2017 and crafting the accompanying list of research recommendations. As a result of grassroots outreach, the community of individuals affected by glomerular diseases has educated many Member of Congress who have become champions on research and patient care issues.

House Letter

On behalf of the community, Congressmen Ryan Costello, Ted Deutch, and Alcee Hastings recently circulated a “Dear Colleague” letter on Capitol Hill that voices strong support for advancing research into FSGS and related conditions at NIH. We asked the entire NephCure community to encourage their representatives to sign on to the letter and the response was overwhelming!

Click here to see the letter and all 27 signatories.

Senate Letter

On the Senate side, Senator Debbie Stabenow lead a letter to the Defense Appropriations Subcommittee asking them to include FSGS as a condition eligible for study in the Peer-Reviewed Medical Research Program in the Fiscal Year 2017 Defense Appropriations Bill. Click here to read the letter and see the signatories.

 

NephCure Kidney International and Local NY Teenager Sydney Levine Launch MARCHing to Awareness

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.

FullSizeRenderMARCHing 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.

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Advocacy Alert! Ask your Senators to sign FSGS funding letter

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]

Be Your Own Best Advocate

1039738_10100501785260311_721709976_oHi, 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

The Unique Adult Experience Webinar

“As far as I knew, kidney disease didn’t run in my family. Most important, I didn’t have time for kidney or any other kind of disease.”dine

Dine Watson, author of the Washington Post article “Kidney disease? I was only 33 years old, and I felt fine” will be featured on our next webinar, The Unique Adult Experience. Diagnosed with FSGS in 1984, Dine’s story will resonate with all adults living with Nephrotic Syndrome and the related diseases.

During this webinar, Dine will offer insight about all aspects of living as an adult with kidney disease, and also how to hope and how to find a community.

Register now to reserve your spot!

Hope to see you there!

Questions? Contact Chelsey at 610-540-0186 ext. 19 or cfix@nephcure.org