The NephCure Foundation is Now NephCure Kidney International August 14, 2014 by Lauren Eva The NephCure Foundation is Now NephCure Kidney International New Name, Same Dedication to a Cure for FSGS and the diseases that cause Nephrotic Syndrome “We are here to create help for today and hope for tomorrow for thousands of Nephrotic Syndrome and FSGS. It is our mission to accelerate research toward better treatments and a cure for these diseases. We will advance this mission as NephCure Kidney International , a catalyzer, convener, and collaborator of and with the best research minds in glomerular disease, as we look to a future without suffering from these diseases,” said NephCure Kidney International (NKI) CEO Mark Stone. NKI continues to be the sole organization focused on funding research and finding a cure for Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome (NS). Each year, more than 8,000 people are diagnosed with NS, and in the US alone more than 26 million Americans suffer from some form of kidney disease. “Our dedication and commitment to helping patients through accelerating research is as firm as ever, and we trust this commitment is reflected in our new name,” said Marilyn Hailperin, NKI Director of Research. Since its inception, NephCure has contributed more than $13 million dollars toward FSGS and NS research. Look for NephCure’s new brand rollout 9:30 Friday, August 15, 2014 when NKI rings the opening bell at the New York Stock Exchange. Learn more about NKI at www.NephCure.org.
Are You Newly Diagnosed or New to NephCure? August 14, 2014 by Lauren Eva Are you or a family member/friend impacted by Nephrotic Syndrome, FSGS -Focal Segmental Glomerulosclerosis – or MCD – Minimal Change Disease? You have come to the right place! Hearing a foreign diagnosis that is difficult to pronounce, let alone understand, is very unsettling. Know that you are not alone. NephCure Kidney International and our community of patients, patient families, medical professionals, and researchers are here to provide you with the tools you need to get connected, get educated and find out about the latest research and treatment options available. How do I get started? Help us help you, by telling us what brought you here to NephCure Kidney International and what resources you are seeking. It’s easy, just click here, answer a few simple questions. This gives us the jumping off point to find out where you are in your individual journey with Nephrotic Syndrome and how we can provide you with the tools you need to join in the fight for improved treatments and the cure!
Montreal ZUMBAS for a cure! August 12, 2014 by Lauren Eva On Saturday, October 26, Rita Spadafora, mother of Andrew, and just hot off the trail of her annual NephCure walk, hosted a ZUMBA-thon to raise nearly $600 for the NepCure Foundation. Congratulations Rita, friends and Family! For more information and to view photos from this event, visit https://www.facebook.com/NephcureCanada
Calgary Virtual Walk August 12, 2014 by Lauren Eva On Saturday, September 28, 2013 several families walked or ran in different areas of Calgary to support The NephCure Foundation. This ‘virtual walk’ was held as an alternative to the walk which, like so many others, had to be cancelled because of the flooding that took place in June. Despite all the challenges , the Calgary walk managed to raise another $31,000.00 for kidney research which brings us another step closer to finding a cure. Also, the funds raised will be matched by The Kidney Foundation of Canada which will bring the total raised to $62,000. Thank you Calgary!
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 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.
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.
“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.