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NephCure’s Patient Navigation Services: Meet Montrez Lucas, LCSW

We are very proud to introduce the NephCure Patient Navigation Program, a key component in helping the rare kidney disease (RKD) community get the answers and care they need, and Montrez Lucas, LCSW, is leading the way.

Montrez Lucas, Associate Director of Patient Navigation

Montrez, NephCure’s Associate Director of Patient Navigation, is a licensed social worker who helps patients, caregivers, and care partners navigate through healthcare services and systems. Before coming to NephCure, Montrez led a team of social workers at Emory University Hospital in Atlanta.

In his role, Montrez offers a resources, guidance, and hope to our community. By offering practical support as well as building helpful and lasting relationships, he ensures RKD patients and families have help navigating the uncertain rare kidney disease journey.

Learn more about our Patient Navigation Program in this Q&A with Montrez.

What is patient navigation?

ML: Patient navigation is used to help patients and care partners navigate through healthcare services and identify problems they may face. These services offer helpful resources they may not have immediate access to, reduce health disparities in the community, and empower patients to receive the care they deserve, while receiving support from someone they can trust.

How does this program serve caregivers and partners?

ML: The program serves caregivers and partners by giving them access to resources to pass along to their loved ones and providing lasting support in a timely manner to assure they can continue to provide the best care to the patient.

It is my duty to keep care partners up to date on how to best serve patients and guiding them to better patient care. The patient journey is important, but care partners serve an important role in every patient’s life.

Why are patient relationships important to you?

ML: I build relationships with patients and families to help guide them and solve the problems they are facing. Each patient is just as important as the next, which is why supporting them through the process of navigating healthcare systems and their general issues is vital.

Building relationships with patients provides them the support they need to promote positive health behaviors and establishes trust. Patients and caregivers deserve to have a great relationship with someone they can rely on to give them the best resources, bring them closer to their goals, and resolve the issues they have.

How can these navigation services help patients and families?

ML: Navigating through the disease journey can be stressful, especially when conquering it alone.

Patients should use these resources if they find themselves needing support. We will be able to provide patients with necessary resources for their journey, and connect them with the right tools, including informative events, webinars, support groups, and more.

They’ll also receive assistance in healthcare access, school support services, medication assistance programs, and access to experts that can put them on the right track. The goal is to get to the patient before it’s too late.

Learn more about NephCure’s Patient Navigation Program and connect with Montrez here.

2015 Countdown to a Cure – THANK YOU!

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)

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)

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The kids did some wonderful work decorating kidneys to help raise kidney awareness! Check out some of the kidneys below!

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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

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 

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

Jet-Food-Store-LogoOn 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. 

TurnerFamilyNephCure 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.

 

NephCure on Capitol Hill for 2014 Kidney Community Advocacy Day

May 12, 2014

ADVOCACY UPDATE logoOn May 1, 2014 more than 100 advocates met with 133 congressional offices, including with 19 Senators and Representatives to raise the profile of kidney disease and make the case for investing in kidney research. Another goal was to garner additional co-sponsors for the Immunosuppressive Drug Coverage Act, which will extend coverage of immunosuppressive drugs for Medicare patients who receive a kidney transplant.

L-R NephCure Advocate Pam Duquette; NephCure CEO Henry Brehm; NephCure Advocate and FSGS Patient Melanie Stewart; Former NFL Player, Kidney Transplant Recipient and Friend of NephCure Donald Jones
L-R NephCure Advocate Pam Duquette; NephCure CEO Henry Brehm; NephCure Advocate and FSGS Patient Melanie Stewart; Former NFL Player, Kidney Transplant Recipient and Friend of NephCure Donald Jones

Organized by the American Society of Nephrology (ASN), the advocacy day drew constituents from fourteen organizations, including NephCure Kidney International, lent support to the effort, joining forces to champion the cause of kidney disease research and treatment, which we hope will lead to a cure.

NephCure was also honored to have one of our own, Melanie Stewart, present to nearly 100 people at a congressional briefing on kidney research and innovation. The briefing, titled “Innovations in Kidney Disease Research: New Hope for Patients,” was co-chaired by U.S. Representatives Tom Marino (R-PA) and Jim McDermott (D-WA), both of whom spoke about their strong support for the kidney community and for research funding to develop cures. “It’s a privilege to tell my story and raise awareness of FSGS, and possible transplant challenges for kidney disease patients,” Stewart said.

About The NephCure Foundation
NephCure Kidney International 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.

Additional Information About The Legislative Agenda
Funding Innovation, Improving LivesResearch and innovation are critical to advancing new therapies for the more than 20 million Americans with kidney disease. Kidney Community Advocacy Day participants will campaign for an additional $150 million per year for 10 years in additional kidney research funding to spur innovation. This funding is needed to help develop new therapies that enhance patients’ lives and ultimately cure this public health burden. Immunosuppressive Coverage—A Common Sense ChoiceKidney transplant recipients must take immunosuppressive drugs to maintain the health of their transplants. Currently, Medicare only covers the cost of these drugs for 36 months. Those who cannot afford to pay for the immunosuppressive drugs (approximately $4,000 per year) end up back on dialysis (the government spends approximately $90,000 a year for care for patients on dialysis).

L-R NephCure Advocate Pam Duquette gives the patient and family perspective as the parent of an FSGS patient, presenting with Nephrologist Sarah Faubel, MD to Congressman Mark Udall’s office
L-R NephCure Advocate Pam Duquette gives the patient and family perspective as the parent of an FSGS patient, presenting with Nephrologist Sarah Faubel, MD to Congressman Mark Udall’s office

Extending Medicare coverage for immunosuppressive drugs over a recipient’s lifetime is the common sense solution, improving quality of life for people with kidney disease and saving taxpayer dollars.Leaders who participated in Kidney Community Advocacy Day know what’s at stake:

  • More than 20 million Americans have kidney disease, the 8th leading cause of death in the United States.
  • 200,000 of these Americans are children and adolescents, 15,000 of whom are reliant on dialysis or a kidney transplant to remain alive.
  • More than 600,000 Americans have kidney failure, known as end-stage renal disease (ESRD).
  • More than 185,000 Americans live with a kidney transplant and more than 100,000 more are on the wait list.
  • Nearly all patients with kidney failure are Medicare beneficiaries regardless of age, income, or disability.
  • ESRD patients account for nearly 7% of Medicare costs but less than 1% of Medicare patients— a total of nearly $35 billion annually.
  • Nearly 28% of Medicare expenditures involve patients diagnosed with kidney disease.

Jet Food Stores Supports Rare Kidney Disease Research with In-Store Program

The Turner family and Jet Food Stores change the face of kidney disease, one kidney at a time.

Jet-Food-Store-LogoOn June 2, Jet Food Stores will launch their seventh annual Kidney Icon campaign in support of The NephCure Foundation, whose mission is to support scientific research pursuing improved treatments and cure for kidney disease FSGS and Nephrotic Syndrome.

Through August 4th, 51 Jet Food Stores locations will display kidney icons available for purchase by patrons for $1 and $5 each.

“The NephCure Foundation is tremendously grateful for the support of Jet Food Stores,” said NephCure CEO, Henry Brehm. “Since 2008, Jet Food Stores has generated an average of $30,000 each year through this Kidney Icon program alone. This funding has supported exciting advances in research, including the identification of over 28 genetic mutations associated with FSGS, a rare and debilitating disease.” For their 2014 campaign, with the help of the surrounding communities, the Georgia convenience store chain hopes to surpass past years’ contributions.

NephCure board member and Jet Foods President Charles Turner is the driving force behind the program. 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. 

Last year, Amy Bussey and her staff at the Jet Store in Douglas, Ga. raised $3,338, the most raised by a single store out of all of their 51 locations. A list of stores participating in the 2014 program can be found here

New for 2014 is an Adopt-A-Store component. Local NephCure families wanted to express their gratitude to Jet Food Stores for improving outcomes for their loved ones.  Each family is “adopting” a store to personally thank the employees who have made a difference in their lives. “It’s a way for our families to explain the impact that Jet Food Stores has in their lives.  An opportunity to share their stories and let these amazing Jet Foods employees meet the true face of NephCure – the families whose lives are impacted by these terrible diseases,” said NephCure COO Mark Stone. 

This major fundraising effort comes weeks after the convenience store company held their 11th Annual NephCure Golf Classic at Twin City Country Club in Sandersville, Ga. Jet Food Stores are working to improve lives in their community and world wide.

About Nephrotic Syndrome

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 result in renal 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.

About The NephCure Foundation

The NephCure Foundation is the only organization solely committed to seeking a cause and cure for the kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome.  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.

Teens Come Together to Take Charge of Their Health

MGE Quizzo S BuckOn 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.

Crissy#SUBC_ForWebIt 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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Yoga For A Cure Fundraiser

Every year on June 21 we celebrate the summer solstice, the longest day of the year and the official start of summer. The summer solstice is celebrated in many parts of the world with day-long festivals bringing communities together.

This year, the community of Sleepy Eye found another way to celebrate the summer solstice, and help NephCure Kidney International. Kris Luebbert, certified yoga instructor and owner of Sky Blue Yoga, led a group of students and supporters in an outdoor yoga practice to raise money for NephCure. All-in-all, over $500 was raised. Read more about the event here

Want to host your own fundraiser? We can help! Contact us at events@nephcure.org for more information.

“Change is good; change facilitates growth.”

An Open Letter from Henry Brehm to the NephCure Family

HenryBrehm“Wow, it has been almost 12 years since I started with NephCure working with dedicated patient families and docs. Over 1000 walks, research conferences, Countdown to a Cure Gala, Lunch & Learns, Golf Tournaments, Rodeos and far too many hospital visits. The organization has grown significantly nationally and internationally and is now poised to go to the next level with new leadership. Two years ago as I approached the magic young age of 60, I told our Chairman of the Board, Dr. Smokler, we needed to begin thinking about my replacement. Change is good; change is necessary and change facilitates growth. Thus I have resigned my position with NephCure Kidney International, handing the baton to the next generation of qualified passionate leaders.

NephCure has grown to be a dynamic leading renal patient advocacy group. I also have participated in several rare disease consortium organizations and NephCure is right there at the top in terms of accelerating research and getting things done. We started with a tiny staff in 2003 and 43 patients on the list. I could not spell Focal Segmental Glomerular Sclerosis nor was there much data. We have raised over $30 million, leveraged another $16 million in matching grants, supported $15 million in research, established The NephCure Kidney Network Patient Registry and are partnering with four new clinical trials for new therapies which developed from networking, making noise with passionate patient/families and putting our noses to the ground with the docs to uncover repurposing and new opportunities.

I have had the privilege to work with dynamic, empowered people and a trusting strategic relationship with leadership who challenged me. Most important; I was so very lucky to have the opportunity to meet so many wonderful families and committed researchers and clinicians over the years. It has been your perseverance and commitment which motivated me and made me impatient for answers and new therapies. I loved my job and I could not wait to get started every day. Correction-it is not a job; it has been my life.  I can fill a binder with all my midnight bedside notes.

NephCure has a growing board, wonderful volunteers and a great staff.  My NephCure experience has taught me that all of us can truly make a difference in peoples’ lives, and I used to think that I could not leave until there was a new treatment or even a cure but I know NephCure  is in good hands and I will be hanging around for six months on a consulting basis to provide whatever help is needed.  I used to dream of the day when Dr. Smokler would be announcing on a stage that a cure had been discovered and I look forward to buying a ticket to that event.

I will never forget my time at NephCure and I will never forget you.”

Everyone at NephCure Kidney International recognizes, without question, that NephCure would not be the organization it is today without the last 12 years of Henry’s leadership. He’s been CEO, tireless advocate, advisor, and friend to many in our NephCure family. Thank you, Henry for everything you’ve done to make NephCure the world-class organization it is today. We wish you great success in your future endeavors and will reserve a special table for you on the day Dr. Smokler announces a cure!

While we all adjust to this change, we continue honoring our commitment to our patients, patient families, donors, researchers, and partners. We pledge that even as we pause to reflect on where we’ve been, we continue to focus on accelerating research now, and look to the future and finding a cure for FSGS and the diseases that cause Nephrotic Syndrome. NephCure Chief Operating Officer Mark Stone is now the Acting CEO of the Foundation. We welcome Mark in this Acting CEO role as he takes the baton from Henry and leads NephCure into the foreseeable future of funding research to find a cure.

Students and Teachers Throw Pies to Raise Money for NephCure

With homemade targets reading “Throw Pies, Save Lives…Support NephCure!” 100 fifth grade students and their teachers from the International School of Brussels raised $520 for NephCure Kidney International during the school’s first ever pie-throwing event on June 24.

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Helped by an uncommonly sunny day, the event sparked a wonderful atmosphere for all involved.

NephCure Executive Director Henry Brehm met with the students and faculty ahead of the event to talk about FSGS & nephrotic syndrome, and the mission and mandate of the Foundation. He gave out Nephcure bracelets, which the kids wore in the days leading up to the event.

The teachers at the six whipped-cream pie-throwing stations took the hits from their students with great humor. See the fun firsthand in this video.

 

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