NephCure’s Richard Fissel Selected as Member of the Kidney Health Initiative’s Inaugural Patient and Family Partnership Council April 22, 2015 by Lauren Eva Announcing Kidney Health Initiative’s Inaugural Patient and Family Partnership Council Members* In order to advance KHI’s efforts to improve patient safety and promote the development of the therapies for diseases that affect the kidneys, KHI recently communicated to the membership the opportunity to serve on the inaugural Patient and Family Partnership Council (PFPC). The established PFPC will assist the Board of Directors and KHI’s various workgroups in providing strategic guidance about how to engage and include patients, their families and care partners in KHI activities, including but not limited to: 1. Advise KHI members regarding patient involvement in their project proposals 2. Outline opportunities for patients to serve once a project has been endorsed 3. Identify patients to serve on project workgroups 4. Collaborate on developing patient centered project(s) to submit for KHI endorsement The KHI Board of Directors have reviewed the submitted applications of many well-qualified candidates for the Patient and Family Partnership Council and have selected the inaugural members. 1. Ms. Celeste Castillo Lee, Chair and Liaison to KHI Board of Directors (Vasculitis Foundation) 2. Ms. Denise Eilers, BSN, RN (Home Dialyzors United) 3. Mr. Richard D. Fissel (NephCure Kidney International) 4. Mr. Kevin J. Fowler 5. Ms. Terry F. Litchfield 6. Mr. Sam Pederson (American Association of Kidney Patients) 7. Ms. Roberta L. Wager, MSN, RN (American Association of Kidney Patients) 8. Ms. Caroline Wilkie (National Kidney Foundation) The PFPC will host its first meeting in May in conjunction with the Third Annual KHI Stakeholders Meeting. *Text provided by the American Society of Nephrology
Why YOU Should Attend a Community Cafe April 6, 2015 by Kylie Karley We know that spring can be extremely busy for everybody, but we wanted to share with you the top 10 reasons why YOU and your family should attend a local Community Cafe Patient Workshop! REGISTER for one in your area! THE TOP 10 REASONS TO ATTEND A COMMUNITY CAFE: 10. Access to leading experts in the Nephrology world 9. Enjoy kidney friendly, low sodium food 8. Learn what 3 questions to ask your nephrologist at your next appointment 7. Find out what events are happening in your area 6. Get the inside scoop on research 5. Meet others and stop feeling alone 4. Hear the do’s and don’ts from a renal dietitian 3. Empower yourself with scientific knowledge 2. Become part of a global community working towards a cure 1. You owe it to yourself to know everything about what’s happening UPCOMING COMMUNITY CAFE SCHEDULE Ann Arbor- May 14
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
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
Kidney Healthy Holiday Recipe Swap and Chat December 4, 2014 by wpengine What’s for Lunch? What’s for Dinner?? What a STRUGGLE…right??? Add in the challenge of dietary restrictions due to Nephrotic Syndrome AND the Holidays!! It can become maddening. The NKI NephSpace Healthy Holiday Eating Recipe Swap and CHAT is coming up on Tuesday December 9th at 8:30 PM Eastern time and it’s just what you need to take a step in the right direction and store away a nice collection of recipes. It’s as easy as pie to join us for the chat: Email patientadvocate@nephcure.org to register. In the subject line, simply type NS Chat and in the message let us know if you have any specific recipe requests or questions about how to connect. If you’ve not had a change to do so, you’ll need to sign up for a NephSpace account Here. Leave us a note on the CHAT page and let us know what recipe you are looking for. Just show up on Tuesday December 9th at 8:30 PM Eastern time with a recipe to swap, share or something you want to know about making an old favorite, more kidney friendly. Joining us for the chat will be the Education and Engagement team, Kelly, Sandie and Lauren, along with Kirsten Michel our intern. Our Very Special Guest will be Daniella Toto, a Nutrition Major at LaSalle University in Philadelphia, who will be help guide the chat and provide tips on swapping out some traditional recipes with equally tasty kidney-friendly fare! Looking forward to talking with you online!! NKI Department of Education and Engagement
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.
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/
Rival Game Relay Raises Money and Awareness for NephCure September 19, 2014 by Lauren Eva RGR Organizers Kate and Mike Maurer Mike and Kate Maurer are runners who came up with an inspired idea and organized a great event for a great cause, but they’re more than that: they’re parents to a wonderful little boy named Alex. Five-year-old Alex is active and energetic, he loves climbing and running…when he’s feeling well enough to play like other five year olds. Alex has Nephrotic Syndrome, a condition neither of his parents had even heard of before he was diagnosed. Ultra-runner Troy Thompson Mike and Kate know the trials of managing and living with NS, and like tens of thousands of others rely on breakthroughs in medical research to find better treatments and a cure for their son. They decided they needed to do something. As avid runners having completed numerous races of distances ranging from 5k to marathon, and team relays of 212 miles, they decided to blend their love of running with their desire to fundraise and created a 124-mile race called the Rival Game Relay. Capitalizing on a centuries-old Iowa rival between the University of Iowa Hawkeyes and the Iowa State Cyclones, they timed their race to coincide with the annual Iowa/ISU football game. Eleven teams registered to complete the course beginning in Ames, IA, Cyclone territory, and finishing just outside of Iowa City, IA, land of the Hawkeyes. Several teams were comprised of eight or more runners who ran various legs, “ultra” teams contained 5 runners or less, and ultra runner Troy Thompson completed 102 of the 124 mile course on his own! NephCure Kidney International thanks the Maurers and all of the runners who participated in the inaugural Rival Game Relay event. The 2014 RGR trophy went to the ISU Cyclones NephCure and the RGR team up to fight kidney disease! Post-race festivities under the RGR tent