NKN Steering Committee: Now Accepting Applications April 17, 2015 by Kylie Karley The most unique aspect of the NephCureKidney Network Patient Registry is that it is governed by a group of patients, patient parents, patient advocates, clinicians, researchers and representatives from industry who work together to ensure that the needs of the NS patient community and the NS research community are met. Each month this group of 18 individuals meets via conference call to discuss topics focusing on recruitment and retention, patient engagement, data collection, and medical profession engagement. Because each group of stakeholders can voice their perspectives on the call, it is ensured that the NKN registry will remain both patient centered and a valuable tool for the research community. Want to be involved? If you are interested, email Joanna Dauber at jdauber@nephcure.orgor call 610-540-0186 x 36. Applications will be accepted until April 27th, 2015.
Levine Family is STANDING UP TO BE COUNTED! April 10, 2015 by Lauren Eva The Levine family just took great steps to STAND UP & BE COUNTED. Meeting with the Congressman, they took just another step for the best representation and advocation for those with Nephrotic Syndrome and FSGS. Sydney Levine, who recently started a viral social media campaign with the #SUBCselfie project, caught the attention of the Congressman as well as many famous, powerful voices across the country. As a result of the Levine family, who never stop trying to find ways to beat FSGS for son and brother, Matthew, the right people are becoming aware and joining in the fight. The Congressman will be taking this to appropriations on the hill next week!
Last Week to Enter! February 9, 2015 by Lauren Eva Cookin’ for Kidneys Recipe Contest NephCure is thrilled to announce the release of our first-ever kidney-friendly cookbook, released in partnership with A.I. DuPont Hospital. Recipes included have been created and tested by certified nutritionists with the needs of kidney patients in mind. In recognition of the AMAZING NKI community, the cookbook will also feature recipes created by patients and their families who are living with Nephrotic Syndrome and FSGS. Cookbook recipes will be selected through an online contest in which patients and their families submit their favorite healthy recipes. Submissions are reviewed and winners are selected by a panel of nutritionists, physicians, patients and family members. SEE GUIDELINES BELOW. Several recipes will be included for breakfast, lunch, dinner and snack categories. In addition, nutrition facts and tips for making healthy eating both convenient and affordable will be given. Forwards by Nemours Nephrology, NKI and A.I. DuPont Hospital will be included as well. Contest Guidelines SUBMISSION DEADLINE: Feb 15 (midnight) To qualify for this contest, participants must: Submit original recipes Submit recipes that are kidney friendly and/or healthy Fill out the submission form provided online Enter submissions by midnight on February 15, 2015 Participants should keep in mind the following: Recipes will be judged based on nutritional value, taste, ease of preparation, etc. No more than one recipe submission per category Upon completing the form and submitting a recipe, participants agree their recipe can be published in the cookbook Winners will receive the following: One free cookbook A profile/about me of themselves in the cookbook SUBMIT YOUR RECIPE HERE The fine print Sponsor: NephCure Kidney International (“Sponsor”): 150 Warner Road., King of Prussia, PA. To enter: Complete the entry form and follow on-screen instructions to register and submit your original kidney-friendly recipe, including step by step instructions, ingredients, prep instruction, and cook time (“Creation”), recipe title and an optional photo of your chocolate recipe (Creation, recipe title and optional photo submitted together shall be deemed an “Entry”). All entrants must have a valid email address and complete the entry form in full. In case of dispute as to identity of the winner who enters, Entry will be declared made by the registered user (meeting eligibility criteria) of the e-mail account, and if a prize is won, it will be awarded to that registered user. Contest ends and entries must be received by 11:59 p.m. EST, 2/14/15. Limit one Entry per person per recipe category during the Entry Period. Entry must meet all of the following requirements or it will be disqualified. Proof of Entry submission does not equate to proof of receipt. Entry must be completely edible: Non-edible items — such as craft sticks, doilies, etc. — may be used as an element of the Entry, provided any such elements that come in contact with the food be of food grade, and all such elements can be easily removed prior to consumption, and do not affect the consumption or the safety of the Creation. The optional photo should be of the completed Creation only (no people, animals or other items should be included in the photograph). Optional photo must be in a png, jpeg or gif file format. Optional photo must be in color. Creation must include ingredients, recipe prep instructions, cook time and temperature. Entry must be original and created by the entrant, unpublished, the sole property of the submitter, and not previously submitted in any other contest. Entry must not violate any 3rd party rights including, but not limited to copyrights, trademark or right of publicity. Entrant agrees and understands that Sponsor may edit or recreate their Entry in any way, at its sole discretion, including, without limitation, substitutions of products named in the entry. Entry must be in English. Ownership and Use of Entry: By submitting an Entry, you (your parent/legal guardian if you are deemed a resident of a jurisdiction that deems you to be a minor) agree that your Entry, including your Creation, recipe, and photograph, and all rights of ownership and publication of same will become the property of Sponsor and will not be returned. In addition, by submitting an Entry, you (your parent/legal guardian if you are deemed a resident of a jurisdiction that deems you to be a minor) agree that NKI shall have the full right to use your name and Entry, commercially or non-commercially, both in a perpetual and worldwide manner, without compensation or notice, unless prohibited. This includes possible use of your name and Entry – whether it becomes a winner or not – in NKI advertising or promotions, including but not limited to print and Internet (may include not only NKI sites but other Internet sites and social networking sites, such as Facebook, Twitter or Pinterest, at the sole discretion of NKI). Entrant agrees and understands that Sponsor may edit or recreate their Entry in any way, at its sole discretion. Voting and Judging: Following the close of the contest, beginning one (1) month on or about 2/15/15 to 3/15/15, A group of qualified judges will vote for their favorite entries using the criteria set forth below. At the conclusion of the contest period, Judges will select 2 winning recipes per category based on the following criteria: Taste Nutritional Value Creativity Ease of Preparation Visual Appeal On or about 4/1/15, judges will announce one (2) Prize Winners per recipe category based on the judging criteria. All decisions of the judges are final and shall be at their sole discretion. Winners will be notified by e-mail on or about 4/5/15. If an entrant changes his/her email address after he/she enters the Contest, it is his/her sole responsibility to notify the Sponsor by (postal) mailing notice to the address listed above to be received by the end of the Contest. Winner and winning recipe will be posted on www.Facebook.com/NephCureFoundation other outlets at its sole discretion. Prizes: All winning entries will be included in the to-be published Kidney-Friendly Cookbook, receive a copy of the Kidney Friendly Cookbook (scheduled to be published early Summer 2015 and have the opportunity to be featured in the cookbook. Total ARV for all prizes is $9.95. Where applicable, no cash substitutions for prizes will be permitted and prizes are non-refundable and non-transferable except at sole discretion of Sponsor. NKI reserves the right to substitute prize of equal or greater value at its sole discretion. Federal, state and local taxes are the sole responsibility of the winners. Eligibility: Contest open to legal residents internationally, 12 years or older, except employees and the families (parents, children, siblings, spouses) of NKI, Facebook, their affiliates, subsidiaries, promotion and advertising agencies. NKI, Facebook, their affiliated companies, subsidiaries, promotion and advertising agencies, representatives, agents or employees are not responsible for, and shall be indemnified by, the prize winners against any claims, injuries, losses or damages of any kind resulting from acceptance, use, misuse, possession, or loss of the prizes. Subject to all federal, state and local laws. Void where prohibited or restricted by law. General: By entering the Contest, entrants (their parents/legal guardians if deemed residents of a jurisdiction that deem them to be minors) accept and agree to these rules and the decision of the judges, which shall be final. Potential winners (his/her parent/legal guardian if deemed a resident of a jurisdiction that deems him/her to be a minor) will be required to sign a Winner’s Agreement and Release and return it by date specified in notification letter or prize will be forfeited in its entirety and another potential winner may be selected. Potential. Release Of Liability & Publicity: All winners (their parents/legal guardians if deemed residents of a jurisdiction that deem them to be minors) consent to the use of their names, photographs or likenesses and limited biographical information (city, state) for publicity or advertising purposes without further notice or compensation, where permitted by law. All entrants release Sponsor, and each of its parents, affiliates, subsidiaries, officers, directors, shareholders, agents, employees, and all others associated with the development and execution of this Contest, from any and all liability with respect to, or in any way arising from, this Contest and/or acceptance or use of the prize, including liability for personal injury, damages, death or monetary loss. Sponsor assumes no responsibility for any injury, loss or damage to entrants’ or to any other person’s computer relating to, or resulting from, entering or downloading any information or software in connection with this contest. Sponsor and its agents are not responsible for technical, hardware, software or telephone malfunctions of any kind, lost or unavailable network connections, or failed, incorrect, incomplete, inaccurate, garbled or delayed electronic communications caused by the user, or by any of the equipment or programming associated with or utilized in this Contest, or by any human or other errors that may occur in connection with this Contest. Other Conditions: Contest Parties are not responsible for: (i) entry submissions or other documentation received after the deadline, or that is lost, stolen, illegible, misdirected, incomplete, or damaged; (ii) human error; (iii) incomplete transmission defaults or faulty network connections, telephone, computer server/system/software failure of any kind; (iv) delayed, garbled or corrupted data; and/or (v) any problems or technical malfunction of any telephone network or lines, computer on-line systems, servers, or providers, computer equipment, software, failure of any e-mail or players on account of technical problems or traffic congestion on the Internet or at any website, or any combination thereof, including any injury or damage to Entrant’s or any other person’s computer related to or resulting from participation in, uploading or downloading any materials for this Contest. Winners List: Winners will be posted on www.facebook.com/NephCure Kidney International on or about 4/1/15.
Become an Advocate This March January 29, 2015 by Lauren Eva Breaking News! NephCure will be accompanying patients and their families to Washington, D.C. on March 11-12 (World Kidney Day!) to speak directly with your legislators in Congress and ask for more government funding for FSGS and NS research. Would YOU like to STAND UP & BE COUNTED in Washington, DC.??As one of the millions of Americans affected by chronic kidney disease, your voice and your story matters. Please email jmartin@nephcure.org to express your interest and get on our list so we can set up meetings with your legislator! TO REGISTER: http://support.nephcure.org/advocacyday
Cuba Gooding Jr. Partners with NephCure to Find a Cure! November 25, 2014 by Lauren Eva Cuba Gooding, Jr. may be best known for his roles as a high-energy football player, dedicated lawyer, or honor-bound solider. Off-camera the beloved actor and father of three is stepping into a new role: advocate and activist. The Academy Award® winning actor is partnering with NephCure Kidney International to raise awareness about kidney disease. “Kidney disease is the ninth leading cause of death in the United States, but is one of the most underfunded in research. FSGS (Focal Segmental Glomerulosclerosis) and Nephrotic Syndrome are some of the most devastating kidney diseases affecting children and adults. NephCure is the only organization in the world focused on raising money for research to get better treatments and a cure for these diseases. When I learned about these conditions I knew I had to do something. I’m proud to partner with NephCure to help them raise awareness,” Mr. Gooding said. Mr. Gooding will join NephCure at Countdown to a Cure, our Annual Fundraising Gala at New York’s Chelsea Piers on December 4. A select number of tickets are available for purchase until December 2 by clicking on this link. Can’t come to the event? You can still join the cause and support NephCure in their quest to end debilitating forms of kidney disease, FSGS and Nephrotic Syndrome. Simply text the word “CURE” along with your donation to 50155, or visit http://www.support.nephcure.org/TeamCuba to pledge your support today. To read the full press release, click here.
Countdown To A Cure Calgary August 12, 2014 by Lauren Eva Countdown To A Cure Calgary successful in raising money and awareness for Rare kidney disease in Canada March 10, 2014 On March 8, The NephCure Foundation held a fundraiser to support Canadian research initiatives seeking the cause and cure for the rare kidney disease FSGS (Focal Segmental Glomerulosclerosis) and Nephrotic Syndrome. Countdown To A Cure, a Denim and Diamonds-themed reception and dinner featured an array of delicious foods, music, silent auction items and more. The event held at Silver Springs Golf & Country Club and attended by more than 120 supporters, raised more than $45,000 for Canada-based research initiatives. Through a partnership with the Kidney Foundation of Canada, every dollar raised from the event will be matched to support specific research programs in Canada. Andrea Galbraith of Calgary organized this first annual event. Andrea’s daughter, Sophia, was diagnosed with the rare kidney disease FSGS at age 2. Since 2010, Andrea has now raised more than $185,000 for research to find a cure for Sophia and others battling these terrible kidney conditions. In addition to Countdown, Andrea’s fundraising efforts have included running a 10k race with her brother, organizing the 2012-13 NephCure runs/walks and a special event in Ontario. “Andrea’s commitment to finding better treatments for her daughter’s disease impacts all families dealing with these kidney conditions,” said Henry Brehm, CEO of The NephCure Foundation. “Andrea is a very special person as every day she gives her time to make life better for others. The volunteers from CIBC, friends and family all contributed to the event’s success.” Andrea’s daughter, Sophia, has been hospitalized more than 40 times because of complications related to FSGS. “I have a sick child and there are others battling kidney disease as well. All they want is to lead a normal life,” said Galbraith. “It’s important for people to know about FSGS and Nephrotic Syndrome. I have an older daughter that is often feels left out because of the health needs of her younger daughter. These conditions impact the lives of patients and their families.” NephCure supports research conducted by investigators associated with Canadian institutions through a grant award co-sponsored with Kidney Foundation of Canada. In 2011, the first recipient of the $100,000 award was Dr. York Pei at University of Toronto. NephCure has committed to support up to two studies at Canadian institutions in 2014. The NephCure Foundation is the only organization solely committed to seeking the cause and cure for the kidney disease 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. Money raised for NephCure in Canada stays in Canada and funds research and education programs applicable to FSGS and Nephrotic Syndrome.
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!
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.