Research Archives

NKI Grand Rapids Walk October 18th

Grand Rapids, MI – The NephCure Kidney Walk returns for the 4th year to the Grand Rapids area, Sunday, October 18^th. The walk brings together 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 Millennium Park, 1415 Maynard Ave SW in Walker, MI. Registration opens at noon and the walk begins at 1 p.m. There is no registration fee, but teams are encouraged to raise at least $1,000, with a total event goal of $10,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/GrandRapids.

The NephCure Kidney Walk is especially meaningful to local residents and co-chairs Heather Luchies and Tressa Hollinger. Both of whose lives and families are impacted by these conditions.

“Being involved in the planning of this walk is my way of giving back to NephCure, who are working hard to find a cure for my disease”, says Heather. “Plus I find it helps “embrace” my disease rather than sit on the couch and do nothing about it.”

Both Heather & Tressa will be on their local Fox 17 station this Saturday morning at 7:40 to do a live interview about the NephCure Kidney International Walk this Sunday.

“This is what I’ve wanted since we partnered with NephCure and started the walk” says Tressa. “More awareness to find a CURE! Let’s rock this Heather Luchies!”

To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/GrandRapids or contact Jayne Drew at jdrew@nephcure.org

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2015 Countdown to a Cure – THANK YOU!

We’ve said “hello” and “goodbye” to another Countdown to a Cure…

From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt speeches delivered by NephCure’s beloved family, the Jones’ and honoree, Olympic athlete Aries Merritt, this event was truly the “Chance of a Lifetime” to make a difference in the fight against Nephrotic Syndrome. The success of Countdown has always been measured by the generosity of the many hundreds in attendance who consistently show support for NephCure and this year, our expectations were overwhelmingly exceeded, for which we could not be more grateful. You are changing the story.

Energies were high and attendees were excited, lighting the way for one of the most successful galas in NephCure history. “Fund a Cure” donations blew expectations out of the water, bidding was at a high and the second annual game of “heads or tails,” brought a touch of silliness to an evening surrounding a very serious cause. Emcee, Moody McCarthy, along with “Asbury Fever,” a Bruce Springsteen Tribute band, kept the party going all night long with many moments filled with laughter, dancing and mingling.

As always, we want to thank the committee who worked so hard to put this event together and the volunteers who generously gave up their time to help this event flourish into a huge success. The 2015 New York Countdown to a Cure raised over $750,000 and many left the event feeling inspired and hopeful.

Finally, thanks to YOU. To each of you reading this who’ve decided to join us in this fight.

We can’t do this alone.
We need you, we’re grateful for you and we thank you.

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NIDDK Tenure Track Position Opportunity for Nephrologists

NephCure Kidney International is pleased to announce the development of a new nephrologist position at NIDDK. A tenure track position is available for a nephrologist to establish an independent research program in the Kidney Disease Section, Kidney Diseases Branch, NIDDK, NIH. The search is particularly focused on individuals studying glomerular physiology or glomerular disease. Research in this section focuses on mechanisms and therapy of glomerular disease under the leadership of Jeffrey Kopp, MD.

Position Requirements

MD degree
Demonstrated expertise and a record of achievement in basic or clinical research
Current board certification in Nephrology
Excellent clinical nephrology skills
Have or be eligible to obtain a current US medical license.

The position will be supported with independent resources commensurate with experience and programmatic needs, including positions for clinical staff, pre-doctoral and post-doctoral fellows, and a budget for consumables and equipment.

Interested applicants should submit a single PDF document containing a Curriculum Vitae, a list of publications, a summary of research accomplishments, a plan for future research including a core research question, the names and contact information of three people who are submitting letters of reference, and copies of no more than 3 publications.

All materials should be emailed to:

Dr. Mark Knepper, Chair, Kidney Disease Branch Search Committee
c/o Lisa Swearinger
SwearingerL@mail.nih.gov

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2014 Research In Review

What a Year We Had in 2014!

Thank you to all those who collaborate with NephCure Kidney International (NKI) to advance its mission to support research leading to better treatments and cures for those suffering with FSGS and other Nephrotic Syndrome diseases. 2014 saw several major successes in the research world that move us closer to achieving our goals.

Below is a summary of NKI’s 2014 research-related accomplishments.

NEPHCURE KIDNEY NETWORK PATIENT REGISTRY

Hundreds of people with primary FSGS and related glomerular diseases enrolled in the newly launched NephCure Kidney Network Patient Registry. These patients and care givers of patients are at the forefront of a movement called “patient powered research”. By sharing and comparing data contributed by patients about their health and quality of life, we can accelerate the development of new treatments, including new drugs. It is important for people with a rare disease to STAND UP & BE COUNTED to ensure research focuses on the issues of greatest importance to patients and their families. To learn more or enroll, click HERE.

RESEARCH GRANTS

In 2014, the NKI grant program committed over $2.6 MM in support for scientific investigations that advance knowledge about the cause of NS disease, evaluate possible drug targets and help physician/scientists track the natural history of these rare diseases. Click HERE for more information about grants awarded to investigators at Washington University Medical Center, Boston Children’s Hospital and Rush University. For more information about the research consortia we support, click HERE for the Nephrotic Syndrome Study Network and HERE to learn more about CureGN.

CLINICAL TRIALS

Patient participation in clinical research is essential to advance new treatments. In 2014, NKI launched several new programs to educate patients and increase awareness of opportunities to participate in research.

The NEW Clinical Trial Finder website lists 16 studies actively recruiting participants in the US and Canada and another 18 around the world.
We launched a Clinical Trial Ambassadors Program to recruit and train volunteers to help educate patients about the benefits (and risks) to participate in clinical trials and educate the medical community about the need for more research into treatments for NS.
We posted, tweeted, emailed and sent letters about NEW FSGS drug trials. Our activities have raised awareness for potential participants and increased the interest of biopharmaceutical companies in working with NKI to advance new drug trials.

CATALYZE, COLLABORATE AND CONVENE

NKI is dedicated to being a catalyst along the research continuum: from support for basic science research to working with the biopharmaceutical industry and the FDA to understand how we might increase the numbers of new drugs moving into the drug approval pipeline and, finally, how to rapidly integrate new treatments into health care practice.

2014 was a busy year as we joined forces with our partners in healthcare and research to promote better treatments and faster cures.

The advocacy work of NKI volunteers, staff and our professional partners in Washington, D.C. was instrumental in significant NEW FUNDING for FSGS and NS research in 2014.

The National Center for Advancing Translational Sciences (NCATS) at the National Institute of Health (NIH) awarded $10 MM in new funding to continue the Nephrotic Syndrome Study Network (NEPTUNE), a consortium of research centers in the US and Canada collecting and analyzing data about patients newly diagnosed with primary NS diseases. NKI was a principal funder of the first phase of this study and continues to support and participate in its expansion.
A second institute in NIH, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) awarded a new $20 MM, 5- year grant to follow patients with FSGS, Minimal Change Disease, Membranous Nephropathy and IgA Nephropathy. NKI was instrumental in collaborating with NIH to get this funding. Click HERE.
For the first time, FSGS is listed as a condition eligible to receive research grants through the Department of Defenses’ Peer-Reviewed Medical Research Program. Because FSGS is listed, FSGS researchers have an opportunity to compete for grants from a NEW funding source. The total amount in the DoD’s program is $247.5 Million!

NKI is a leader in assembling, facilitating and promoting professional meetings that bring together partners from industry and the academic world along with patients and their advocates to promote NS health research. In 2014, NKI:

Organized the 10^th International Podocyte Conference in Freiburg, Germany. This conference brings together researchers from a variety of scientific disciplines and from around the world to promote interactions and new collaborations and to investigate emerging directions in podocyte and glomerular biology research.
Convened the PRO in Glomerular Disease Scientific Conference with representatives from academic medical centers, the biopharmaceutical industry, the NIH and the FDA to pursue the development of Patient Reporting Outcome (PRO) instruments to advance new drug trials for FSGS and NS. (A PRO is any report of the status of a patient’s health condition that comes directly from the patient.) An FDA-accepted PRO instrument can accelerate the number of applications to the FDA for new drug trials. NKI continues to lead the development of a PRO development consortium.
Convened the third NephCure Research Accelerator Meeting that brought together physicians and scientists with representatives from more than a half dozen biopharmaceutical companies with an interest in drug development for kidney disease. Research Accelerator Meetings were initiated by NephCure to engage these two scientific groups in an exchange of knowledge that will accelerate translation of basic science discoveries to new treatments for people with NS diseases.
Presented a session on the NephCure Kidney Network and patient-powered research to the US Summit of Kidney Organizations hosted by the America Society of Nephrologists at its 2014 conference in Philadelphia. NKI continues to be a leader in bringing the voice of patients to the forefront of advocacy for new treatments for chronic kidney diseases such as FSGS, Minimal Change Disease and Membranous Nephropathy.

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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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International Podocyte Conference in Montreal

NephCure hosted the 12^th International Podocyte Conference in Montreal from May 31 to June 2, 2018. With over 309 attendees, including researchers, study coordinators, pharmaceutical representatives, physicians, and trainees, the conference was a huge success and one of the largest in the conference’s history. New this year was a deliberate focus on “bench to bedside” research, concentrating on applying research uncovered in the lab towards improving treatments for patients.

The biannual conference – most recently also held in Germany, Miami, and Israel – focuses on a specific cell in the kidney called a podocyte. These cells have “foot processes” that look like tentacles, which wrap around capillaries to help the kidney filter blood. The tentacles and general shape of the podocyte resemble an octopus, which is also the conference’s mascot!

The banner for this year’s Podocyte Conference.

NephCure CEO Josh Tarnoff introduced the conference on a positive note: While 20 years ago little was known about the function of the podocyte and how it related to chronic kidney disease, today, in part because of the connections made at past Podocyte Conferences, we have huge developments in treatments. There are now many pharmaceutical companies interested in Nephrotic Syndrome, and they are seeking to develop treatments as a result of discussions at these biannual conferences.

NephCure CEO Josh Tarnoff introducing the conference.

As in past years, NephCure hosted a patient education workshop for families in conjunction with the conference. The one-day program featured talks on treatment options, updates in research, and dietary recommendations, and brought together 25 patient families and more than 75 people impacted by Nephrotic Syndrome.

Dr. Tomoko Takano of McGill University speaking on Cytoskeleton Regulators in Health and Disease.

In Nephrotic Syndrome, the kidney’s podocytes are not functioning properly. This loss of function is one of reasons that protein leaks into the urine. It was once thought that when podocytes stop functioning, they could not be restored. However, Podocyte Conference Steering Committee Member Stuart Shankland discussed new research in regenerating these cells in animal models with the intention of developing treatments for human patients during his presentation, “Developmental origin of podocyte in injury.” Shankland has been researching how parietal epithelial cells may be able to repair or regenerate injured podocytes. Both parietal epithelial cells (PECs) and podocytes are a part of the Bowman’s capsule, a membrane that surrounds the glomerulus of each nephron in a kidney.

The Bowman’s capsule, featuring the tubular pole (TP), the podocytes (Pod), the parietal epithelial cells (PEC), the vascular pole (VP), and the Bowman’s space (BS).

Ryuichi Nishinakamura of Japan’s Kumamoto University spoke on “Dissecting podocyte development and disease in kidney organoids.” An organoid is an group of artificially-grown cells that resemble an organ. Researchers use organoids to learn more about how organs and organ cells like podocytes function. Anna Greka, a researcher and physician at Harvard’s Broad Institute, delivered a talk in the Advances in Therapeutics for Glomerular Nephropathies portion of the conference. Her lecture, “Mechanism-based precision therapies for progressive kidney disease,” in addition to many other presentations, emphasized the importance of personalized treatments for patients.

Dr. Peter Mathieson of the University of Edinburgh at the question mic.

The feedback we received on the conference was overwhelmingly positive, and many participants said it will impact their practice and research. One participant said, “More collaboration with basic scientists will lead to find[ing a] cure for podocytopathy,” meaning all diseases that affect podocytes. Other participants commented that the conference helped them in “Recognizing novel pathways of disease that will provide targets for ongoing and upcoming clinical trials.” The researchers were grateful for a space to share their developments and forward the field. Another idea common to the evaluations was the gift of hope for the future many of these talks provided. One responder explained that the conference “raises optimism for future care.”

The multi-faceted concept of research, from basic science to clinical trials to cures, is ingrained in NephCure’s DNA. We are invigorated by the discussions at this year’s Podocyte Conference and look forward to hosting the next conference in Manchester, England in 2020.

(Photography by Photos FERA – www.photosfera.ca)

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NephCure Joins ASN to Fund 2014 Kidney Research Fellows

NephCure is happy to partner with the American Society of Nephrology and the ASN Foundation for Kidney Research to co-fund one of the 19 new research projects aimed at improving the quality of life for millions of kidney disease patients.

The 2014 recipient of NephCure Kidney International-ASN Foundation for Kidney Research Grant is Heon Yung Gee, MD, PhD at Boston Children’s Hospital.

“The 2014 grant recipients will propel advances in patient care and outcomes through basic, translational and clinical research,” Chair of the Board of Directors Bruce A. Molitoris, MD, FASN, said. “ASN is delighted to support this research and foster the careers of the next generation of investigators who will advance care for kidney patients.”

For more information on all the recipients and their research, read the full article here.

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The 10th Annual International Podocyte Conference Sold-Out in Freiburg, Germany

Three hundred Nephrology researchers and clinicians descended on the university town of Freiburg, Germany to share the latest data on podocyte and kidney disease research. Co-chaired by Dr. Tobias B. Huber of Freiburg, and Dr. Thomas Benzing of Cologne, the 2014 conference presented a record number of abstracts to investigators and students from around the globe. “We are very excited by this participation, and the opportunity to share the latest research with our colleagues on topics ranging from biomarker data research to glomerular function, podocyte regeneration, and other topics. It is only through this research that cures for glomerular diseases will be found,” said Dr. Huber.

Organized in collaboration with NephCure Kidney International, demand for the 10^th Annual meeting became so high that conference organizers had made live stream video of the presentations available to additional attendees. The conference chairs recognized the expertise of their global scientific advisory committee in bringing a rich and vibrant meeting to life.

“It’s powerful to be at the 10^th conference, and to see how far research has come in the search for answers which will drive the development of new therapies for FSGS and other Glomerular diseases. The npartia[ation and collaboration amongst the scientists, the bio-pharmaceutical companies and clinicians is exciting to see happen,” said NephCure Kidney International CEO Henry Brehm. “We have more to do, and being among these professionals gives me hope.”

Organizers closed the conference with a traditional awards ceremony. Dontscho Kerjaschki received the prestigious Marilyn Farquhar Award for Podocyte Research 2014. Evelyne Huynh Cong, Stefan Porubský,and Hani Suleiman received the Best Abstract Award. A full list of the 2014 International Podocyte Conference schedule and more information is available here. The 2016 International Podocyte Conference will convene in Jerusalem, Israel.

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Claritas Genomics Launches Convenient Genetic Testing Option For Nephrotic Syndrome Patients

On September 11, 2014, Claritas Genomics in Cambridge, MA, announced the creation of its newest genetic screening panel, which tests gene variants commonly associated with steroid resistant Nephrotic Syndrome in children. The test uses next-generation gene sequencing techniques to detect mutations in the 28 most common gene variants associated with Nephrotic Syndrome, making it the largest genetic panel for any pediatric kidney disease.

Typical candidates for this genetic test include: 1) pediatric patients less than 12 months old; 2) pediatric patients that do not respond to steroid therapy; 3) patients with a family history of Nephrotic Syndrome; 4) pediatric patients with features of FSGS; and 5) patients who have congenital malformations associated with Nephrotic Syndrome.

In a time where healthcare is becoming more patient centric, as opposed to disease centric, genetic screening may lead to more ‘personalized’ treatment based on the characteristics of a patient’s disease profile. Information about genetic underpinnings of Nephrotic Syndrome may inform what drugs are used for initial treatment, provide improved information for patients and families about the likely clinical course of disease, could improve the selection of appropriate transplant donors and provide opportunities for genetic counseling for other family members.

“This is the start of an exciting new era in understanding genetic factors that play a role in the onset and progression of at least some cases of Nephrotic Syndrome. NephCure Kidney International is proud to have supported the research at Boston Children’s Hospital that led to the development of this commercial application,” says Marilyn Hailperin, National Director of Research for NephCure. “Clear guidelines for when to seek genetic testing and the impact on patient treatment still need to be developed, but the availability of tests such as ClariFocus will help to advance scientific knowledge that will lead to better therapies.”

Patients and their family members should talk with their nephrologist about this new test. It is only available with a physician order at this time.

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NephCure Kidney International Announces NKN Steering Committee Co-Chairs

We are pleased to share that Kathleen Broderick and Randall Snyder were recommended and have accepted their nominations as Steering Committee Co-Chairs for the NephCure Kidney Network (NKN). Kathleen was considered a strong candidate due to her dual experience as a patient caregiver as well as a patient advocacy representative. Similarly, Randy’s dual perspective as a patient caregiver and clinical provider give him unique insight relevant to the NKN.

Kathleen is a member of the NephCure Board of Directors and Research Committee and an editor at DeGruyter Publishing, a Science, Technology, and Medicine (STM) publisher of professional books and scholarly journals in Boston, Massachusetts. Additionally, Kathleen cares for her 16-year-old son, who was diagnosed with Nephrotic Syndrome at 20 months.

Randy is an interventional radiologist with his master’s in molecular biology living in Medford, New Jersey, who cares for his son who was diagnosed with focal segmental glomerulosclerosis.

Kathleen and Randy will be facilitating Steering Committee calls and communication moving forward. Please join us in welcoming Kathleen and Randy as the inaugural NKN Steering Committee Co-Chairs!

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NEW!! Clinical Studies Map!

NephCure Kidney International Introduces Clinical Research Map

October 14, 2014

We are excited to introduce a new user-friendly, interactive clinical research map. This map includes current clinical research sites and studies available to patients affected by FSGS and other Nephrotic Syndrome diseases. The map, which can be found here, will help patients sort through studies available to them. Categories include studies specific to adults, pediatrics, Nephrotic Syndrome, and FSGS, to name a few.

“Patient participation is key to advancing research and treatment options available to patients,” says Marilyn Hailperin, the National Director of Research at NephCure. “This site map allows patients to view studies underway in their area.”

This map is another way NephCure is living out our mission to support research seeking the causes of Nephrotic Syndrome diseases, to improve current treatments and, ultimately, to find a cure. Here at NephCure, we value the supportive role we play for our patients. Spreading the word about clinical research to our patients is a crucial aspect of this role, because, after all, patients power research!

Link to the map: here.

For more information about the risks and benefits of participating in clinical research, click here.

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Seeking Volunteers for NEW Clinical Trials Ambassador Program

Have you ever participated in a clinical research study? Are you willing to share your experience with others? If so, then you would make a fantastic addition to our newest initiative to find better treatments and a cure for Nephrotic Syndrome: the Clinical Trials Ambassador Program! NKI is seeking volunteers from across the country to act as Ambassadors to other patients and the medical community. Ambassadors will spread knowledge and information about the importance of clinical research in the search for better treatment options and a cure.

Ambassadors can expect to spend between 5 and 10 hours a month volunteering in various ways that will help spread awareness and knowledge about clinical research. If you are interested in learning more about the Clinical Trials Ambassador Program, contact Chelsey Fix at cfix@nephcure.org.

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We’ve said “hello” and “goodbye” to another Countdown to a Cure…

We can’t do this alone.We need you, we’re grateful for you and we thank you.

NephCure Kidney International Introduces Clinical Research Map

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We can’t do this alone.
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