Nephrotic Syndrome Archives

Q&A with Dr. Kopp of the NIH

Dr. 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?

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?

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?

Dr. 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?

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

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August is Advocacy Month

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

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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.

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.

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Every gift has a story.

Use new eCards to tell someone you love that you care about them.

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Atlanta NKI Walk Celebrates it’s 6th year September 26th.

The NephCure Kidney Walk returns for the 6th year to the Atlanta area, Saturday, September 26^th. 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

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Watch the Demystifying Research Webinar!

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

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The Evolution of Alternative Medicine

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.

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5th Grade Class Celebrates World Kidney Day!

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!

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Genetic Findings from an NKI Funded Researcher

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.

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NephCure’s Richard Fissel Selected as Member of the Kidney Health Initiative’s Inaugural Patient and Family Partnership Council

Announcing Kidney Health Initiative’s Inaugural Patient and Family Partnership Council Members*

In order to advance KHI’s efforts to improve patient safety and promote the development of the therapies for diseases that affect the kidneys, KHI recently communicated to the membership the opportunity to serve on the inaugural Patient and Family Partnership Council (PFPC).

The established PFPC will assist the Board of Directors and KHI’s various workgroups in providing strategic guidance about how to engage and include patients, their families and care partners in KHI activities, including but not limited to:

1.     Advise KHI members regarding patient involvement in their project proposals
2.     Outline opportunities for patients to serve once a project has been endorsed
3.     Identify patients to serve on project workgroups
4.     Collaborate on developing patient centered project(s) to submit for KHI endorsement

The KHI Board of Directors have reviewed the submitted applications of many well-qualified candidates for the Patient and Family Partnership Council and have selected the inaugural members.

1.     Ms. Celeste Castillo Lee, Chair and Liaison to KHI Board of Directors (Vasculitis Foundation)
2.     Ms. Denise Eilers, BSN, RN (Home Dialyzors United)
3.     Mr. Richard D. Fissel (NephCure Kidney International)
4.     Mr. Kevin J. Fowler
5.     Ms. Terry F. Litchfield
6.     Mr. Sam Pederson (American Association of Kidney Patients)
7.     Ms. Roberta L. Wager, MSN, RN (American Association of Kidney Patients)
8.     Ms. Caroline Wilkie (National Kidney Foundation)

The PFPC will host its first meeting in May in conjunction with the Third Annual KHI Stakeholders Meeting.

*Text provided by the American Society of Nephrology

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Levine Family is STANDING UP TO BE COUNTED!

The Levine family just took great steps to STAND UP & BE COUNTED. Meeting with the Congressman, they took just another step for the best representation and advocation for those with Nephrotic Syndrome and FSGS. Sydney Levine, who recently started a viral social media campaign with the #SUBCselfie project, caught the attention of the Congressman as well as many famous, powerful voices across the country. As a result of the Levine family, who never stop trying to find ways to beat FSGS for son and brother, Matthew, the right people are becoming aware and joining in the fight. The Congressman will be taking this to appropriations on the hill next week!

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Legislative Action Alert

On the heels of our very successful Advocacy Day, comes this Alert. Please take action before end of day on Friday, March 20

Request that House and Senate Members sign on to letters supporting FSGS research

Members of the House and Senate have drafted letters urging their colleagues in Congress to support medical research on focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome (NS) through the National Institutes of Health and the Department of Defense.

Contact your two Senators and your House Representative to ask them to sign on to the letters. If a large number of Members of Congress express support for research on FSGS/NS, federal agencies will respond by continuing to prioritize their FSGS/NS research portfolios.

To determine your two Senators: Visit www.senate.gov, and select your state in the drop-down menu on the top-right corner of the webpage. Click ‘go.’ Your two Senate offices will appear with their DC office phone numbers and webpages.

To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and a link to the webpage of your House office will appear. You may need to enter your full address if more than one Representative is listed.

Action:

Call your two Senate offices and your Representative’s office.
Tell the person that answers the phone that you are a constituent.
Ask to speak with the health staffer and deliver the message below. If you can’t reach the health staffer, it is OK if you deliver the message to someone else or to a voicemail.
Ask if you can send a follow-up email and request an email address.
Send a follow-up email based on the message below.

Recommended Message – [brackets] indicate where to insert specific information:

“I am a resident of [CITY]. [Cite any meetings you may have had with the office.]
I am contacting you to request that your office sign on to a letter supporting research on FSGS. The closing date is March 23^rd.

[In the Senate: “The letter is led by Alex Graf in Senator Stabenow’s office”] or [In the House: “The bipartisan letter is led by Dante Cutrona in Rep. Costello’s (R-PA-6) office and Joel Richard in Rep. Deutch’s (D-FL-21) office.”]

FSGS and the diseases that cause nephrotic syndrome are devastating kidney diseases. FSGS is a leading primary glomerular cause of end-stage renal disease.
[Briefly tell your story as a patient, parent, caregiver, etc.]
I hope you will sign on to the letter supporting FSGS research before March 23^rd.
Please keep my posted on the actions you take. You can reach me at [phone and/or email].”

Thank you! Feel free to forward this information to friends and family members as well. Every call helps!

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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.

Announcing Kidney Health Initiative’s Inaugural Patient and Family Partnership Council Members*

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