NephCure Kidney International ®

Saving Kidneys, Saving Lives

August is Advocacy Month

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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.

meetingBackground
Members of Congress will be in their districts from Monday, August 1st until Friday, September 2nd, Legislators use this time away from Capitol Hill to meet with their constituents 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. NKI will assist you with the rest. Taking action is easy:

– Inform NKI of your interest in making a local congressional visit by contacting our Washington Representative, Philip Goglas II at Goglas@hmcw.org. At this time, please provide Phil with your address and zip code so he can identify your legislators.
– Consider making a local visit as a group, either with colleagues or other affected individuals from your area that you are in contact with.
– Familiarize yourself with the issue briefs and talking points below. NKI will also send you branded advocacy materials to provide to the office(s) that you meet with. These materials include comprehensive information that can assist you with discussing these topics.
– NKI will send you the contact information for the local congressional office near you. Please call this office and work to schedule a recess meeting at a time that is convenient for you or your group’s schedule.
– NKI’s Washington Representatives are available to advise and assist you with making an effective local visit. Please let NKI know if you would like any training and we will connect you with the appropriate folks so they can support your efforts and answer any questions you might have.
– 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 NKI with a brief summary of your discussion and whether you believe any follow up is needed.

About the Issues
Each year, NKI outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. In order for a member of Congress to understand and take appropriate action on these issues, their office needs to be properly educated by a constituent. To be successful in your meetings you will not need to remember complicated political information, you just need to tell your story.

Your Advocacy at Work – New Funding for FSGS Research

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Since 2014, NKI and our dedicated community of patient advocates have been encouraging Congress to include FSGS on the Department of Defense’s list of conditions eligible for research funding through the Peer Reviewed Medical Research Program. Learn more about these efforts here.

Directly as a result of our advocacy, FSGS was included on the list in 2015 and 2016. This new stream of grant funding gives FSGS researchers access to up to $278 million in grant awards. Last year was the first year that FSGS researchers were able to submit grant applications for this new funding stream and recently, the DoD  announced which of those applications were recommended for funding. We are thrilled that five FSGS projects made the list!

FY 2015 Discovery Award

Suzie Pun – University of Washington

FY 2015 Investigator-Initiated Research Award – Partnering PI Option

Ali Gharavi – Columbia University Medical Center

Simone Sanna-Cherchi – Columbia University Medical Center

Suzie Pun – University of Washington

Stuart Shankland – University of Washington

We can’t wait to tell you more about the winning projects for 2015 and look forward to even more success in the 2016 cycle.

In order to ensure that FSGS continues to be included as an eligible condition each year, we must continue to advocate. Stay tuned for more information about what you can do to help!

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)

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! 

Debunking Clinical Trials Myths

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clinical trial mini infographic

MYTH:
Participating in a clinical trial will just make me a “human guinea pig”

FACT:
A common fear is that those giving you care in a clinical trial won’t treat you like a person or a patient. However, the opposite is true. Participating in a clinical trial gives you access to some of the best care available to patients. Also, strict ethical and regulatory guidelines are in place to ensure that each participant is treated fairly and respectfully, not to mention that all drugs in clinical trial phase go though a vigorous testing process before they are approved for use in a clinical trial.

 

MYTH:
I like my doctor, and if I participate in a trial, I won’t be able to see them anymore

FACT:
This is not true. Participants are encouraged to continue seeing their regular doctor in addition to any appointments they may have with the trial staff. A physician on the clinical trial staff does not replace your regular doctor.

 

MYTH:
If I participate in a clinical trial, I’ll have to go off of the medications that keep me in remission

FACT:
Each trial has a different protocol, or set of rules. Some trials have a protocol that allows participants to stay on current medicines. Or, if a trial asks participants to stop taking their current medications, participants are closely monitored and immediately given their original medicine and dosage if their symptoms worsen. The health of each participant is top priority for every clinical trial team.

 

MYTH:
There are no trials happening near me, therefore I can’t participate

FACT:
There are currently 17 clinical trials that are recruiting patients with Nephrotic Syndrome diseases at nearly 300 sites throughout the United States. If there is not a site close to you, many trials will pay for your travel (like the DUET study!).

 

MYTH:
If a clinical trial will help me, my doctor will tell me about it

FACT:
While we all love our doctors and respect their opinion, the truth is that they are extremely busy. We can’t expect them to save lives everyday and remember every clinical trial going on. Sometimes doctors just don’t know about clinical trials, or are unsure if their patients are interested. The best approach to participating in research is to do some research yourself and then take questions to them. If your doctor is unaware of a trial, they can find out more information and help you make a decision. However, please remember that only YOU can make the decision to advance research to help find better treatment options by participating in a clinical trial.

Click HERE to learn more about clinical drug trials 

Renal Support Network Holds 13th Annual Essay Contest

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RSN’s 13th Annual Essay Contest Begins!


THIS YEAR’S THEME: “How Have You Used Your Experiences to Give Hope to Others with Kidney Disease?”

First Prize: $500
Second Prize: $300
Third Prize: $100

Last Years Winning Essays Below!

1st Place – “Help! I’m a Blowfish” by Angelique Barber
2nd Place – “D.R.I.N.K.” by Arthur DeBose
3rd Place  – “Choose Acceptance” by Riley Pummill
Honorable Mention – “Temporarily Speaking” by Sandra Kisselback
Honorable Mention – “A Positive Attitude” by Sarah Tompkins

 

“People who live successfully with a chronic illness like kidney disease know firsthand the importance of having an innovative perspective not only toward their illness, but also toward life in general. There is an abundance of talent within the renal patient community, and the RSN Essay Contest provides people who have CKD with a forum where they can share their experiences, strength, and hope, as well as inspire others.”

– Lori Hartwell, RSN President and Founder

Click here for previous winners. 

Support NephCure on #BTIGCharityDay – April 28, 2015

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BTIG Commissions for Charity Day is Tuesday, April 28, 2015.  SUPPORT NEPHCURE KIDNEY INTERNATIONAL on that day by asking your broker to trade through BTIG.  Just ask that the trade support NephCure Kidney International.  It will not cost you or your broker anything, commissions generated from the trades executed by BTIG on Charity Day are donated to charities nominated by BTIG clients.  NKI is one of those charities!

“BTIG Charity Day has grown into a global initiative. As a firm, we are passionate about the success of our annual event and are committed to supporting meaningful causes,” said Steven Starker, Co-Founder of BTIG. Since the event’s inception in 2003, BTIG’s clients, celebrity partners and employees throughout its U.S., London, Hong Kong, Singapore and Sydney offices, have raised more than US$30 million for hundreds of charitable organizations around the world, including over US$5 million from the May 2014 event last year.

“We are always impressed by the number of well deserving organizations that our clients and celebrity partners support and bring to our attention each year. It’s an honor to be a part of an event that makes such a significant impact on improving opportunities for children and others worldwide,“ said Scott Kovalik, Co-Founder of BTIG.

2015 BTIG Charity Day Preview Video:  https://vimeo.com/120527307

If you have questions about how to designate NKI as your beneficiary – please call NKI at 610-540-0186 ext. 24.

About BTIG

BTIG is a global financial services firm specializing in institutional trading, investment banking and related brokerage services. With an extensive global footprint and more than 475 employees, BTIG, LLC and its affiliates operate out of 13 cities in North America, Europe and Asia Pacific. BTIG offers execution, expertise and insights for equities, equity derivatives, ETFs, fixed income, futures, commodities, foreign exchange, interest rates, credit, and convertible and preferred securities. The company’s core capabilities include global sales, portfolio, electronic and outsource trading, investment banking, prime brokerage, capital introduction, corporate access, research and strategy, commission management and more. Disclaimer: https://www.btig.com/Disclosures.aspx

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

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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

Why YOU Should Attend a Community Cafe

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We know that spring can be extremely busy for everybody, but we wanted to share with you the top 10 reasons why YOU and your family should attend a local Community Cafe Patient Workshop! 
REGISTER for one in your area! 

THE TOP 10 REASONS TO ATTEND A COMMUNITY CAFE:

10.     Access to leading experts in the Nephrology world

9.         Enjoy kidney friendly, low sodium food

8.         Learn what 3 questions to ask your nephrologist at your next appointment

7.         Find out what events are happening in your area

6.         Get the inside scoop on research

5.         Meet others and stop feeling alone

4.         Hear the do’s and don’ts from a renal dietitian

3.       Empower yourself with scientific knowledge

2.      Become part of a global community working towards a cure

1.      You owe it to yourself to know everything about what’s happening

UPCOMING COMMUNITY CAFE SCHEDULE

Ann Arbor- May 14 

Organizational Mission

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 Nephrotic Syndrome, improve treatment and find a cure.

Our Proud Partners

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Contact Us

150 S. Warner Road
Suite 402
King of Prussia, PA 19406
1.866 NephCure (637-4287)
info@nephcure.org
EIN: 38-3569922

© Copyright 2016 NephCure Kidney International, Inc. All rights reserved worldwide. NephCure Kidney International, and the logo, are federally registered trademarks of NephCure Kidney International, Inc.