Chicago Walk for the Cure 2014 October 15, 2014 by Lauren Eva The Sunday, October 12, 2014, Chicago Walk for the Cure held in Addison, Il. was a huge success with over 115 walkers, including 10 patient families. After the walk, a carnival was held with games for all ages, along with a bake sale and raffle. The event raised over $10,000. Congratulations to our organizing committee and their families for making this event memorable.
San Fran Bay Area Community Cafe – November 1, 2014 October 7, 2014 by wpengine Community Café – Connections for a Cure Coming to the San Francisco Bay Area Soon! Date: Saturday, November 1, 2014 Time: 9:30 AM – 1:00 PM (PST) Place: Stanford Park Hotel 100 El Camino Real Menlo Park, CA 94025 United States Do you live in the San Francisco Bay Area or surrounding areas and have questions about living with FSGS/Nephrotic Syndrome? Register for our FREE Community Café Patient Education Seminar in Menlo Park on November 1st because knowledge is POWER and connecting with others brings HOPE! PLEASE REGISTER by clicking this link: https://nephcure.org/get-involved/nephcure-community-education/
NephCure Silent Auction and Scavenger Hunt – Herndon, VA September 5, 2014 by wpengine Come out and join the fun in Herndon, Virginia with this exciting fundraiser! Local volunteer and lead fundraiser Nikki Buermeyer is holding her fifth annual event to support NephCure Kidney International. WHEN: Saturday, October 11, 2014 from 2-5pm WHERE: Frying Pan Park Visitor’s Center at 2709 West Ox Road, Herndon, VA 20171 Join us for our fifth annual event benefiting NephCure Kidney International! This year we are excited to bring you even more fun ways to raise support for this important cause. Silent auction Video scavenger hunt Live band Wine, beer and baked goods Free T-shirts to anyone that donates $50! Contact Nikki Buermeyer with questions, suggestions, or if you would like to donate to the silent auction or volunteer. Email nbuermeyer@teamnephcure.org Phone: 703-476-8203 Thank You to our Sponsors!
Montreal Walk August 12, 2014 by Lauren Eva On September 14, 2013 in Montreal’s Parc Maisonneuve, friends and members of the Spadafora family gathered for the annual NephCure Walk in support of ‘Team Andrew’. Over $16,000 was raised at the event and this amount will be matched by the Kidney Foundation of Canada bringing the combined total for the event to $32,000! Congratulations to everyone on a job well done!
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!
Jet Food Stores annual NephCure Golf Classic set for May 6, NASCAR Driver David Ragan and Former UGA Football Phenom David Greene to Attend August 8, 2014 by Lauren Eva 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.
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.
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.
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.