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.
Community Cafe Kick-off! January 21, 2015 by Kylie Karley NKI is kicking off its Community Café tour! Visiting cities like Stamford, CT, Birmingham, AL, and Miami, FL., there is sure to be a café near you. Click here to see when and where these FREE patient education seminars are happening. Don’t miss this chance to get up close and personal with leading experts in the field while enjoying kidney-healthy food. REGISTER for Stamford Cafe on Feb. 4th REGISTER for Birmingham Cafe on Feb 28th REGISTER for Miami Cafe on March 7th
Countdown to a Cure ’14 – THANK YOU from NephCure! December 18, 2014 by Lauren Eva Another Countdown to a Cure has come and gone, but CDTAC 2014 was anything but ordinary. From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt dedication of NephCure’s inaugural Humanitarian of the Year award to Michael Levine, Countdown to a Cure 2014 was a night to remember. The real success of Countdown , however, has always been measured by the generosity of many hundreds in attendance who consistently show support for NephCure in our quest to accelerate research to find better treatments and a cure. Auction bidders were excited, Fund a Cure donations exceeded expectations and along with plenty of paddle raising, many participated in a game of “Heads or Tails,” willing to get a little silly for the cause. Those of us at NephCure are incredibly grateful, and we would never be able to express our gratitude enough. There are so many people, without whom, this night would not have been so successful. First, we would like to express heartfelt appreciation to Committee co-chairs Rich Genatt and Michael Levine. Michael and Rich are persistence personified, and their leadership of our Countdown committee is unmatched. Speaking of the Committee, a very special thanks to every member of our Countdown committee for your unique and invaluable contributions. Another thank you to the Milligan Family, our 2014 Fund a Cure Honorees. Jennifer and Jarrett, your unwavering determination to spread awareness and your passion for finding a cure for all those affected by Nephrotic Syndrome is the picture of strength and courage in the face of adversity. Congratulations! Joining us in kicking off the evening was Michelle Williams, Grammy award winning singing sensation and host of Oxygen’s Fix My Choir. Michelle graciously took the stage to welcome everyone in attendance. NephCure would like to thank Ms. Williams and congratulate her on the release of her fourth album, Journey to Freedom, as well as her nomination for a Stellar Music Award. We are thrilled to continue to work with Ms. Williams as a future Ambassador for NephCure. NephCure would also like to thank special guest Cuba Gooding Jr. The Oscar® award winning actor took the stage in supreme fashion and delivered a wonderfully vibrant dedication to Michael Levine, presenting him with his Humanitarian of the Year award with passion and enthusiasm. Thank you for your support of NephCure, Mr. Gooding, and best wishes and congratulations on both the upcoming release of Paramount Picture’s “Selma,” and your role as O.J. Simpson in FX’s American Crime Story. Finally, thanks to YOU. To each of you reading this who’ve decided to STAND UP & BE COUNTED to fight FSGS and Nephrotic Syndrome. We can’t do this alone. We need you, we’re grateful for you, we thank you. Watch Videos Here: [huge_it_videogallery id=”3″]
Seeking Volunteers for NEW Clinical Trials Ambassador Program November 5, 2014 by Kylie Karley Have you ever participated in a clinical research study? Are you willing to share your experience with others? If so, then you would make a fantastic addition to our newest initiative to find better treatments and a cure for Nephrotic Syndrome: the Clinical Trials Ambassador Program! NKI is seeking volunteers from across the country to act as Ambassadors to other patients and the medical community. Ambassadors will spread knowledge and information about the importance of clinical research in the search for better treatment options and a cure. Ambassadors can expect to spend between 5 and 10 hours a month volunteering in various ways that will help spread awareness and knowledge about clinical research. If you are interested in learning more about the Clinical Trials Ambassador Program, contact Chelsey Fix at cfix@nephcure.org.
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 Kidney International Announces NKN Steering Committee Co-Chairs October 2, 2014 by Kylie Karley We are pleased to share that Kathleen Broderick and Randall Snyder were recommended and have accepted their nominations as Steering Committee Co-Chairs for the NephCure Kidney Network (NKN). Kathleen was considered a strong candidate due to her dual experience as a patient caregiver as well as a patient advocacy representative. Similarly, Randy’s dual perspective as a patient caregiver and clinical provider give him unique insight relevant to the NKN. Kathleen is a member of the NephCure Board of Directors and Research Committee and an editor at DeGruyter Publishing, a Science, Technology, and Medicine (STM) publisher of professional books and scholarly journals in Boston, Massachusetts. Additionally, Kathleen cares for her 16-year-old son, who was diagnosed with Nephrotic Syndrome at 20 months. Randy is an interventional radiologist with his master’s in molecular biology living in Medford, New Jersey, who cares for his son who was diagnosed with focal segmental glomerulosclerosis. Kathleen and Randy will be facilitating Steering Committee calls and communication moving forward. Please join us in welcoming Kathleen and Randy as the inaugural NKN Steering Committee Co-Chairs!
Claritas Genomics Launches Convenient Genetic Testing Option For Nephrotic Syndrome Patients September 24, 2014 by Lauren Eva On September 11, 2014, Claritas Genomics in Cambridge, MA, announced the creation of its newest genetic screening panel, which tests gene variants commonly associated with steroid resistant Nephrotic Syndrome in children. The test uses next-generation gene sequencing techniques to detect mutations in the 28 most common gene variants associated with Nephrotic Syndrome, making it the largest genetic panel for any pediatric kidney disease. Typical candidates for this genetic test include: 1) pediatric patients less than 12 months old; 2) pediatric patients that do not respond to steroid therapy; 3) patients with a family history of Nephrotic Syndrome; 4) pediatric patients with features of FSGS; and 5) patients who have congenital malformations associated with Nephrotic Syndrome. In a time where healthcare is becoming more patient centric, as opposed to disease centric, genetic screening may lead to more ‘personalized’ treatment based on the characteristics of a patient’s disease profile. Information about genetic underpinnings of Nephrotic Syndrome may inform what drugs are used for initial treatment, provide improved information for patients and families about the likely clinical course of disease, could improve the selection of appropriate transplant donors and provide opportunities for genetic counseling for other family members. “This is the start of an exciting new era in understanding genetic factors that play a role in the onset and progression of at least some cases of Nephrotic Syndrome. NephCure Kidney International is proud to have supported the research at Boston Children’s Hospital that led to the development of this commercial application,” says Marilyn Hailperin, National Director of Research for NephCure. “Clear guidelines for when to seek genetic testing and the impact on patient treatment still need to be developed, but the availability of tests such as ClariFocus will help to advance scientific knowledge that will lead to better therapies.” Patients and their family members should talk with their nephrologist about this new test. It is only available with a physician order at this time.
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!
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!
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.