NephCure Kidney International ®

Saving Kidneys, Saving Lives

Advocacy in Action – Nephrotic Syndrome Research Funding Support Letters

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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.

 

Advocacy Alert! Ask your Senators to sign FSGS funding letter

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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]

2015 Countdown to a Cure – THANK YOU!

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

Bravo Events - 2015From 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.

Red Carpet, Nephcure-6

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.

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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.

BRAVO EVENTS -- "NEphcure Event" -- Pictured: (l-r) -- (Photo by: Heidi Gutman/Bravo)

NKI Grand Rapids Walk October 18th

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Heather Tressa CollageGrand Rapids, MI – The NephCure Kidney Walk returns for the 4th year to the Grand Rapids area, Sunday, October 18th.  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

 

Watch the Demystifying Research Webinar!

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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 

The Evolution of Alternative Medicine

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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.

Want to read more? Visit: http://www.theatlantic.com/health/archive/2015/06/the-evolution-of-alternative-medicine/396458/

INSIDE LOOK: 21st Century Cures

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What is the 21st Century Cures bill?

Co-sponsor of the bill, Fred Upton, describes our current situation as such: patients who need “the next generation of treatments and cures, but they do not have until the next generation to wait.”

This bill was designed to update, and effectively, accelerate the drug development process. It is funded by the federal sale of oil from the national reserve.

 What does this bill actually do?

  • Guarantees 8.75 billion dollars to the National Institute of Health (NIH)
  • AND, 550 million dollars to the Food and Drug Administration (FDA) over the course of the next five years

In that regard, 21st Century Cures will be a huge win for the rare disease community by:

  • Ensuring mandatory funding for the NIH
  • Providing funds to the FDA to streamline the clinical trials process
  • Incentivizing the development of “orphan products,” which are medical products intended for the diagnosis, prevention, or treatment of rare diseases
  • Paving the way for the development of new cures and treatments for the 7,000 rare diseases—including NS—which currently have no approved treatment

Now that I know what the bill does, what can I do?

The legislative initiative, 21st Century Cures, was passed in the House on July 10, 2015.  HOWEVER, our work is not finished. Before this bill can become a reality, it must also pass the Senate.

Stay tuned for advocacy alerts from NephCure to see how you can get involved! 

Major Breakthrough Against Rare Kidney Disease

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In recent news, there has been what could be a huge discovery regarding membranous nephropathy. MN is a rare kidney disease that falls under the umbrella term of “Nephrotic Syndrome.” At this point in time, there are still no successful, first-line treatments for this disease. Now, however, researchers have been able to identify the site at which antibodies bind to the kidney and cause damage in patients with MN.

These findings were published in the Journal of the American Society of Nephrology. Researchers were able to create a three-dimensional model of the protein, known as PLA2R. PLA2R is a transmembrane glycoprotein, previously identified as the surface protein that allows antibodies to bind on to the kidney. By creating this 3-D model, researchers were able to narrow in and determine the specific area of the PLA2R protein that antibodies bind to. Furthermore, researchers found that small molecules, acting as competitive inhibitors, could block this site and prevent antibodies from actually attaching.

So what does this mean? By knowing where antibodies bind to on the kidney, this open up new possibilities for MN treatments. There are two exciting methods that the article mentions. The first is removing antibodies from the PLA2R binding site once they are present, and the second is preventing antibodies from binding altogether. Ultimately, this article provides  insight into a new path from which treatments, and even cures, for MN may come to fruition.

To read more, visit: http://www.sciencedaily.com/releases/2015/05/150521091747.htm

A Call for More Specific Standards of Care

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From a new article, published by Nephrology News and Issues, comes a provocative call for more specific standards of care in nephrology. As of now, the standard of care for the majority of kidney-failure patients is to follow a similar treatment plan, regardless of the cause for their kidney failure. Yet, according to research conducted at Stanford University School of Medicine, this approach is not enough. In fact—it could even be dangerous.

Researchers used data from over 84,000 patients, who between 1996 and 2011, suffered end-stage kidney disease due to one of six major glomerular disease types. The results were shocking. Mortality ranged all the way from 4% per year for patients with subtype, IgA nephropathy, to 16% per year for patients with subtype, vasculitis. Furthermore, patients with lupus nephritis were almost 2x as likely to die as those with IgA nephropathy. In other words, the specific type of glomerular disease determined how long a patient lived after developing kidney failure. As one researcher put it, “when you divide patients according to their glomerular disease subtype, you actually see a whole spectrum of outcomes (O’Shaughnessy).” And yet, the current standard of care is to follow a similar treatment plan for most kidney-failure patients, regardless of cause.

“We showed that a patient’s cause of kidney failure is strongly associated with their risk of dying after starting dialysis or receiving a kidney transplant.” Thus, treatment can no longer be generalized and non-specific. Medical professionals cannot ignore the cause of kidney failure and proceed with treatment as though all kidney failures are one and the same. The cause of kidney failure cannot be forgotten. Rather, it should be the stepping point from which treatments are determined, and tailored toward disease-specific risks. More so, further research is necessary to determine why these survival disparities exit from one patient to the next. If medical professionals begin to take into consideration what caused the kidneys to fail in the first place, it could possibly improve the patient’s quality of life and even increase their life span following kidney-failure.

To read more, visit: http://www.nephrologynews.com/study-shows-importance-of-cause-of-kidney-failure-when-planning-future-treatment/

 

Our Mission

NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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