Get Involved Archives

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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Every gift has a story.

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

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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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INSIDE LOOK: 21st Century Cures

What is the 21^st 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, 21^st 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, 21^st 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!

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Support NephCure on #BTIGCharityDay – April 28, 2015

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

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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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Why YOU Should Attend a Community Cafe

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

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Rival Game Relay Raises Money and Awareness for NephCure

Mike and Kate Maurer are runners who came up with an inspired idea and organized a great event for a great cause, but they’re more than that: they’re parents to a wonderful little boy named Alex. Five-year-old Alex is active and energetic, he loves climbing and running…when he’s feeling well enough to play like other five year olds. Alex has Nephrotic Syndrome, a condition neither of his parents had even heard of before he was diagnosed.

Mike and Kate know the trials of managing and living with NS, and like tens of thousands of others rely on breakthroughs in medical research to find better treatments and a cure for their son. They decided they needed to do something. As avid runners having completed numerous races of distances ranging from 5k to marathon, and team relays of 212 miles, they decided to blend their love of running with their desire to fundraise and created a 124-mile race called the Rival Game Relay. Capitalizing on a centuries-old Iowa rival between the University of Iowa Hawkeyes and the Iowa State Cyclones, they timed their race to coincide with the annual Iowa/ISU football game.

Eleven teams registered to complete the course beginning in Ames, IA, Cyclone territory, and finishing just outside of Iowa City, IA, land of the Hawkeyes. Several teams were comprised of eight or more runners who ran various legs, “ultra” teams contained 5 runners or less, and ultra runner Troy Thompson completed 102 of the 124 mile course on his own!

NephCure Kidney International thanks the Maurers and all of the runners who participated in the inaugural Rival Game Relay event.

The 2014 RGR trophy went to the ISU Cyclones

NephCure and the RGR team up to fight kidney disease!

Post-race festivities under the RGR tent

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Jet Food Stores annual NephCure Golf Classic set for May 6, NASCAR Driver David Ragan and Former UGA Football Phenom David Greene to Attend

May 1, 2014

On May 6, Jet Food Stores will host the NephCure Golf Classic at Twin City Country Club in Sandersville, Georgia. The event will benefit the NephCure International Kidney Foundation, an organization committed to supporting research seeking a cure for the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome.

This is the 15th year of the golf tournament and the 11th it will benefit NephCure. The event has generated more than $350,000 for the NephCure mission since its inception. Forty-five foursomes have registered for the event.

NephCure board member and Jet Foods President Charles Turner is the driving force behind the event. This cause is important to his family and their goal of supporting research to discover and make available better treatments for all families dealing with these kidney conditions.

NASCAR driver and NephCure Ambassador David Ragan will attend. The Ragan family has a long history with Jet Food Stores. “We sponsored Ken Ragan 30 years ago,” said David Usry, vice president at Jet Food Stores. “We then started sponsoring his son David when he was 10 years old. We’ve sponsored him throughout his career. We’ve always had a great relationship with them; a friendship more than anything. [David] is a great guy and he has never forgotten where he came from,” Usry concluded. Ragan drives the No. 34 Ford for Front Row Motorsports in the NASCAR Sprint Cup Series.

Another standout attendee will be David Greene, a former quarterback from University of Georgia. “He’s like Joe Namath around here,” Usry said. “He’s a great guy with a lot of Character.” Greene played for Georgia from 2000 to 2004. During his tenure, he set the NCAA Division I record for wins (42), a record set previously by Peyton Manning, and led the Bulldogs to a Sugar Bowl win in 2002. Greene spent three years in the NFL after being drafted by the Seattle Seahawks in 2005.

Registration for the tournament will begin at 9 a.m. and will be followed by an autograph session with Ragan and Greene. Food and refreshments will be available throughout the course and a dinner will conclude the day.

Nephrotic Syndrome and FSGS are conditions that affect the tiny filtering mechanisms in the kidney. The result is that beneficial protein is spilled from the kidney into the urine and lost. Over time this condition can lead to kidney failure and the need for dialysis or a kidney transplant. The cause for Nephrotic Syndrome and FSGS is not known and there is no cure.

The NephCure Foundation is the only organization solely committed to seeking a cause and cure for Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). Comprised of patients, their families and friends, researchers, physicians, and other healthcare professionals, NephCure aims to help science unlock the biological mechanisms that cause these serious conditions and ultimately find a way to cure and prevent them.

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NephCure Participates in BTIG Commissions for Charity Day

May 19, 2014

BTIG, LLC, a global financial services firm specializing in institutional trading and related brokerage services, raised over $5 million on Tuesday May 13th, 2014, from its annual Commissions for Charity Day. The event hosted athletes and celebrities as “guest-traders” to help raise money for a wide range of children’s charities and other important causes. The money raised this year will be donated to a number of charities from around the world. NephCure was among many charities selected to participate.

“Guest-traders” from this year’s event, included: Beth Ostrosky Stern, Bobby Valentine, Bode Miller, Bridget Moynahan, Carmelo Anthony, CC Sabathia, Damaris Lewis, David Wright, Eduardo Garcia, Eli Manning, Joe Namath, Jorge Posada, Mariano Rivera, Matt Harvey, Matt Dillon, Padma Lakshmi, Petra Nemcova, Phil Simms, Reggie Jackson, Shaquille O’Neal, Victor Cruz and many more.

“This year, with the help of our clients, we partnered with more celebrities and professional athletes than ever to raise an unprecedented amount of money to support many important causes,” said Scott Kovalik, co-founder and CEO of BTIG.

“We really look forward to our charity day each year as it’s a great time for our clients and employees to come together to support important causes. The unique platform gives celebrities an unusual vehicle through which they can donate their time and raise money for causes important to them.” said Steven Starker, co-founder of BTIG, “This was our strongest year yet, and we are eager to see how the event makes a difference for the participating charities.”

Over the past twelve years, the firm has raised more than $30 million and supported hundreds of charitable organizations. This year’s event set records for the annual charity day with the amount of donations raised and the number of charities involved.

About BTIG
BTIG, LLC is a global financial services company offering products and services across Equity Trading, Global Portfolio and ETF Trading, Derivatives, Fixed Income, Futures & Commodities, Foreign Exchange, Convertible/Preferred Securities, Corporate Access, Equity Research, Capital Markets, Prime Brokerage, Electronic Trading and Outsource Trading. With U.S. offices located in New York, San Francisco, Dallas, Boston, Chicago, Los Angeles, Atlanta, Red Bank, and Purchase and overseas affiliates located in London, Hong Kong, Singapore and Sydney, BTIG, including through its affiliates, employs more than 450 professionals worldwide.

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What does STAND UP & BE COUNTED mean to you?

At The NephCure Foundation, we believe everyone can make a difference in the search for better treatments and a cure for FSGS and Nephrotic Syndrome; we believe everyone can STAND UP & BE COUNTED for their child, spouse, loved one, friend, even for ourself.

Through June 16, Tweet, Instagram, and Facebook post with #SUBC and an anonymous donor will give $5 to NephCure! Who do you STAND UP for? Get the flyer and post every day! Be sure to tag your post with #SUBC and share with your friends. STAND UP & BE COUNTED.

Thank you for taking the time today to consider supporting NephCure in our fight to end debilitating kidney diseases like Focal Segmental Glomerulosclerosis (FSGS) and other conditions that cause Nephrotic Syndrome (NS). Thank you for doing what you could in the past to contribute toward finding a cure. The fight continues, and more support is needed.

Today, you have a chance to do more. Today you have a chance to STAND UP & BE COUNTED in the fight to find a cure for the rare, life-altering kidney diseases that cause Nephrotic Syndrome.

Chances are you know someone suffering from a kidney disease. If you do, you’ve seen firsthand how lives have been affected by endless dialysis appointments, the anxiety of waiting for a kidney transplant, the burning desire to keep hope alive while waiting for a treatment that could help, and ultimately a cure. You can do something today. Your contribution is more than financial – you are contributing your voice. You are choosing to STAND UP & BE COUNTED for your child, your friend, your neighbor, or loved one in the fight against kidney disease. You are contributing hope for a cure.

Eight-thousand people are diagnosed with Nephrotic Syndrome every year. People like 4-year-old Mason who’s lived with NS for more than half his life already, and 30-year-old Tessawhose life was turned upside down when she became ill while pregnant with her son, and was ultimately diagnosed with FSGS. Each person with a condition that causes NS has a story like Mason’s and Tessa’s, and each one is waiting for a cure.

You, like so many others, take your charitable contributions seriously. You want to be part of finding a solution, and not feel like just another donor contributing to overhead or operating costs. We’re asking you to be part of a solution. When you contribute through STAND UP & BE COUNTED, your funds go to NephCure, but your contribution goes to your loved one, your friend, your neighbor. You are doing more than sending a donation, you are standing up for someone you know, someone you love, someone you cherish.

We know that every patient counts. We won’t rest until we’ve funded the research that finds a cure for each of these rare, debilitating diseases. STAND UP & BE COUNTED today – 93 cents of every dollar you donate goes directly into research, education, and advocacy programs. You matter. Every contributor and every dollar counts. Who will you stand up for today in the fight to find a cure?

The diseases are rare. Helping doesn’t have to be.

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Teens Come Together to Take Charge of Their Health

On Friday, June 6, 2014, a luncheon/meet-up designed just for teens and ‘tweens and their families was held at Nemours/A. I. duPont Hospital in Wilmington, Delaware. It was the first joint venture between NephCure and Dr. Joshua “J.J.” Zaritsky, Nemours Pediatric Nephrologist. The idea for this educational and fun-filled event came from 14-year-old Samantha Buck of Logan Township, NJ. Sam previously attended a Lunch & Learn event (Community Café) and stated, “When can we have a meeting like this for kids my age?” Dr. Zaritsky’s staff along with NCF Department of Education/Engagement Director, Lauren Lee and Patient Engagement Specialist, Sandie Rollins worked to make Samantha’s wish come true. The teens were also invited to join a brand new Facebook group launched for young adults from 13-25, which will be available to join the week of June 9, 2014. The group is called Kidney Strong and it is a supportive community for teenagers and young adults who have FSGS and Nephrotic Syndrome.

It was a beautiful day and much of the event was held outdoors in an enclosed courtyard with a flowing fountain. The educational portion of the day included: the newCommunity programs sponsored by NephCure for patient families, information/explanation of patient-powered registry, the NephCure Kidney Network (presented by Abbey Swan, NephCure Operations and Grant Administrator), Healthy Eating tips presented by Nemours Registered Dietician, Megan O’Neill, and a parents-only session on Coping with Chronic Illness presented by Nemours’ Social Worker, Jessa Lewis.

The teen/ ‘tween fun and recreational events included a Quizzo tournament, arts and crafts, Make-A-Friend Bingo plenty of laughs and some great NephCure and Nemours SWAG as a parting gift. In the end, everyone left with a new sense of community, and a commitment to finding better treatment options and a cure for FSGS and Nephrotic Syndrome.

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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.

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.

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

Our Mission

Find Us On

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