NephCure Attends National Kidney Foundation Spring Clinical Meetings in Las Vegas, Nevada August 8, 2014 by Lauren Eva NephCure went to Las Vegas last week for the National Kidney Foundation’s Spring Clinical Meetings, where 3,000 nephrologists, nurses, dietitians, and social workers, among others, gathered to learn about the newest developments related to all aspects of nephrology practice. We met with some area Nephrologists and patients and shared information around the NephCure Kidney Network Patient Registry (NKN). NephCure Scientific Advisory Board members Dr. Debbie Gipson, Dr. Daniel Cattran, and Dr. Gerald Appel were in attendance and led workshops on updates in Nephrotic Syndrome for 2014. NephCure was also one of several authors of “Understanding Decision Making in Nephrotic Syndrome (NS) from the Perspective of Patients, Parents and Providers” which was presented at the Poster Session throughout the conference. We also saw a lot of promotion for the Luis Collazo fight, which took place May 3rd at the MGM Garden Arena. Collazo was wearing NephCure in support of his friend Allie Genatt.
NephCure on Capitol Hill for 2014 Kidney Community Advocacy Day August 8, 2014 by Lauren Eva May 12, 2014 On 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 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 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.
NephCure Participates in BTIG Commissions for Charity Day August 8, 2014 by Lauren Eva 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.
Jet Food Stores Supports Rare Kidney Disease Research with In-Store Program August 8, 2014 by Lauren Eva The Turner family and Jet Food Stores change the face of kidney disease, one kidney at a time. On 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.
What does STAND UP & BE COUNTED mean to you? August 8, 2014 by Lauren Eva 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.
Teens Come Together to Take Charge of Their Health August 8, 2014 by Lauren Eva 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.
The 10th Annual International Podocyte Conference Sold-Out in Freiburg, Germany August 8, 2014 by Lauren Eva 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 10th 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 10th 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.
Yoga For A Cure Fundraiser August 8, 2014 by Lauren Eva 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.
NephCure Joins ASN to Fund 2014 Kidney Research Fellows August 8, 2014 by Lauren Eva 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.
“Change is good; change facilitates growth.” August 8, 2014 by Lauren Eva An Open Letter from Henry Brehm to the NephCure Family “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.