2015 Countdown to a Cure – THANK YOU! November 20, 2015 by Lauren Eva We’ve said “hello” and “goodbye” to another Countdown to a Cure… From the beautiful scenery of New York City’s Chelsea Piers, to the heartfelt speeches delivered by NephCure’s beloved family, the Jones’ and honoree, Olympic athlete Aries Merritt, this event was truly the “Chance of a Lifetime” to make a difference in the fight against Nephrotic Syndrome. The success of Countdown has always been measured by the generosity of the many hundreds in attendance who consistently show support for NephCure and this year, our expectations were overwhelmingly exceeded, for which we could not be more grateful. You are changing the story. Energies were high and attendees were excited, lighting the way for one of the most successful galas in NephCure history. “Fund a Cure” donations blew expectations out of the water, bidding was at a high and the second annual game of “heads or tails,” brought a touch of silliness to an evening surrounding a very serious cause. Emcee, Moody McCarthy, along with “Asbury Fever,” a Bruce Springsteen Tribute band, kept the party going all night long with many moments filled with laughter, dancing and mingling. As always, we want to thank the committee who worked so hard to put this event together and the volunteers who generously gave up their time to help this event flourish into a huge success. The 2015 New York Countdown to a Cure raised over $750,000 and many left the event feeling inspired and hopeful. Finally, thanks to YOU. To each of you reading this who’ve decided to join us in this fight. We can’t do this alone. We need you, we’re grateful for you and we thank you.
NKI Grand Rapids Walk October 18th October 15, 2015 by wpengine Grand Rapids, MI – The NephCure Kidney Walk returns for the 4th year to the Grand Rapids area, Sunday, October 18th. The walk brings together area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Millennium Park, 1415 Maynard Ave SW in Walker, MI. Registration opens at noon and the walk begins at 1 p.m. There is no registration fee, but teams are encouraged to raise at least $1,000, with a total event goal of $10,000. The event is open to the public, but registration is encouraged in advance at support.nephcure.org/GrandRapids. The NephCure Kidney Walk is especially meaningful to local residents and co-chairs Heather Luchies and Tressa Hollinger. Both of whose lives and families are impacted by these conditions. “Being involved in the planning of this walk is my way of giving back to NephCure, who are working hard to find a cure for my disease”, says Heather. “Plus I find it helps “embrace” my disease rather than sit on the couch and do nothing about it.” Both Heather & Tressa will be on their local Fox 17 station this Saturday morning at 7:40 to do a live interview about the NephCure Kidney International Walk this Sunday. “This is what I’ve wanted since we partnered with NephCure and started the walk” says Tressa. “More awareness to find a CURE! Let’s rock this Heather Luchies!” To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/GrandRapids or contact Jayne Drew at jdrew@nephcure.org
Chicago is Walking for a Cure this Weekend! September 17, 2015 by wpengine Co-chair Sue Rogers walks for her son. The NephCure Kidney Walk returns for the 9th year to Chicagoland this Sunday, September 20th. The walk brings together Chicago area patients, friends, and family dedicated to raising awareness and vital funds to find improved treatment options and a cure for primary Chronic Kidney Diseases, including FSGS and nephrotic syndrome. The walk will be held at Centennial Park, 1776 W. Centennial Place, Addison, IL. Registration opens at 9 and the walk begins at 10 a.m. Music, food, and games will be held afterwards, plus fantastic raffle prizes, including a pair of tickets to the inaugural Countdown To A Cure Chicago fundraising gala themed Crusade For The Cure on Friday, November 6th at Architectural Artifacts at 4325 N Ravenswood Ave., Chicago. The walk is open to the public, but registration is encouraged in advance at Chicago Walk. The NephCure Kidney Walk is especially meaningful to Romeoville resident and walk organizer Sue Rogers, whose son has been dealing with Focal Segmental Glomerulosclerosis (FSGS) for over 11 years. “I love the support I have found from parents I’ve connected with through the walk,” said Rogers. “Some have been through so much already with their children, including dialysis and a kidney transplant. I admire their strength. Just being able to talk to another mom who understands what you are going through helps me maintain my sanity when I question myself how I’ll manage to handle it all.” Chicago native Aries Merritt won the bronze medal in the 110m hurdles in Beijing at the world track and field championships last month, with less than 20 percent kidney function caused by FSGS – days before receiving a kidney transplant. It is estimated that kidney disease affects 31 million people in the United States alone, with African Americans being 3 times more likely to experience kidney failure. Last year, 90,000 Americans were killed by kidney disease, more than breast cancer and prostate cancer. Some doctors believe kidney disease of this nature might be the next epidemic of our generation. Start your team today! Team fundraising is a great way to get your friends, family, co-workers and neighbors involved. Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. Cannot physically make the event? Maybe you have a wedding on walk weekend. Or your son or daughter has a soccer game. Maybe you’re moving to a new house. We get it. Fall can be a busy time. But remember just because you can’t make it to walk day, doesn’t mean you can’t keep the tradition alive and make an impact by fundraising in support of NephCure Kidney International. Leave your footprint as a Virtual Walker. Please join in the fun & fundraising and setup a Virtual Walk Team and share with your friends & family on social media. We need everyone’s involvement. You will still be able to earn the commemorative Walk T-shirt! Click on “Start a Team“ to get started or go to support.nephcure.org/chicago to join a team. REMEMBER – You can still Fundraise for your Walk team AFTER the walk is over for the remainder of 2015. So it’s not too late! Share your Team Fundraising Page & Photos on Social Media! Make sure you share frequently your page and event photos on Facebook, Instagram, Twitter and with your email lists. Use the hashtags #Selfies4NephCure #NKIWalk #Chicago A special thank you to Chicago Walk Co-Chairs Sue Rogers and Julia Bacarella – We are thankful for all that you do! To register or donate to the NephCure Kidney Walk, please visit support.nephcure.org/Chicago or contact Jayne Drew at jdrew@nephcure.org
Watch the Demystifying Research Webinar! July 21, 2015 by Kylie Karley Watch NKI and special guest speaker Dr. Jonathan Hogan from The University of Pennsylvania, as we demystify Nephrotic Syndrome research! Research is important to all members of the NS community- so why not learn about it! We talk about how research works, what is happening in the NS research world, and what patients and their families can do to help. Come with your research questions, and prepare to have them answered! CLICK HERE TO WATCH THE WEBINAR
Support NephCure on #BTIGCharityDay – April 28, 2015 April 27, 2015 by Lauren Eva BTIG Commissions for Charity Day is Tuesday, April 28, 2015. SUPPORT NEPHCURE KIDNEY INTERNATIONAL on that day by asking your broker to trade through BTIG. Just ask that the trade support NephCure Kidney International. It will not cost you or your broker anything, commissions generated from the trades executed by BTIG on Charity Day are donated to charities nominated by BTIG clients. NKI is one of those charities! “BTIG Charity Day has grown into a global initiative. As a firm, we are passionate about the success of our annual event and are committed to supporting meaningful causes,” said Steven Starker, Co-Founder of BTIG. Since the event’s inception in 2003, BTIG’s clients, celebrity partners and employees throughout its U.S., London, Hong Kong, Singapore and Sydney offices, have raised more than US$30 million for hundreds of charitable organizations around the world, including over US$5 million from the May 2014 event last year. “We are always impressed by the number of well deserving organizations that our clients and celebrity partners support and bring to our attention each year. It’s an honor to be a part of an event that makes such a significant impact on improving opportunities for children and others worldwide,“ said Scott Kovalik, Co-Founder of BTIG. 2015 BTIG Charity Day Preview Video: https://vimeo.com/120527307 If you have questions about how to designate NKI as your beneficiary – please call NKI at 610-540-0186 ext. 24. About BTIG BTIG is a global financial services firm specializing in institutional trading, investment banking and related brokerage services. With an extensive global footprint and more than 475 employees, BTIG, LLC and its affiliates operate out of 13 cities in North America, Europe and Asia Pacific. BTIG offers execution, expertise and insights for equities, equity derivatives, ETFs, fixed income, futures, commodities, foreign exchange, interest rates, credit, and convertible and preferred securities. The company’s core capabilities include global sales, portfolio, electronic and outsource trading, investment banking, prime brokerage, capital introduction, corporate access, research and strategy, commission management and more. Disclaimer: https://www.btig.com/Disclosures.aspx
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
Check out our Peer to Peer Programs! March 19, 2015 by Lauren Eva One of the most important things we do at NephCure is connect people to others experiencing similar challenges of living with chronic kidney disease. Whether it be understanding the complexity of Nephrotic Syndrome/FSGS, the side effects of medications, frequent trips to the nephrologist or navigating your way through labs and diets, it can be incredibly overwhelming. At NephCure, we understand the value of connecting patients and caregivers with others to share experiences, frustrations and, better yet, good news! That’s why we’re expanding our Peer to Peer Support Program. In addition to our online support community, NephSpace, we offer our Patient to Patient Connections (P2PC) program. P2PC is a worldwide organized network of patients and caretakers whose lives have been affected by the diseases causing Nephrotic Syndrome and FSGS. It is designed to connect individuals via email or phone based upon any or all of the following: diagnosis, symptoms, and complications, age of individuals or sometimes specific geographical area. Our volunteer patient/caretaker ambassadors are committed to offering support and sharing their experiences with others who are facing similar challenges. You can learn more or be connected with a patient/caretaker ambassador here https://nephcure.org/?p=1390. We encourage you to take time to make connections with others in similar situations as we know you will benefit greatly from the support and sharing! If you are interested in becoming Volunteer Patient/Caretaker Ambassador please visit https://nephcure.org/get-involved/become-a-volunteer/ or contact Kelly Helm at khelm@nephcure.org.
Advocacy Day 2015! March 16, 2015 by Lauren Eva Wow. I mean, WOW! The last two days are the reason I do Government Advocacy! We had 37 people there – comprised of 5 staff members, 1 board member, 14 different families, children aged 2-16, a Mayor and even parents whose son passed away from complications of a transplant. These are our constituents, these are the faces of NS/FSGS. I was so proud, excited, energized by these families who traveled (many from the west coast!) to be here, tell their story and STAND UP & BE COUNTED for their loved ones! We are so grateful and we thank each and every one of the following participants: Tamekia Bernard, Maria Bradley, Justine Byun, Gregory Byun, Betsy Calloway, Dylan Clancy, Pam Duquette, Lindsay Duquette, Matt Duquette, Richard Fissel, Wayne Hall, Ashlee Harrison, Zeke Harrison, Zoey Harrison, Terry Hauk, Steve Hauk, Lisa Hollomon, Matt Hollomon, Geni Hubbard, Jessie Hull, Jeff Hull, Genneia James, Jaylen James, Jordan James, Annmarie Naples, Anthony Naples, Cecilia Naples, Grace Naples, Kimberly Queen, Helga Queen, Kathleen Romanczuk, Rhoda Thompson, Manu Varma – Jessica Martin, Director of Program Operations, NKI [Best_Wordpress_Gallery id=”5″ gal_title=”Advocacy Day 2015″]
Bedford Mother Shares Her Story at Rare Disease Day March 12, 2015 by Lauren Eva On February 23, 2014, aka Rare Disease Day, Lisa Cimino – a member of the NephCure family and mother to FSGS patient Brianna – shared her story and talked about what living with a rare disease is like at the State House in Boston. Read her story here.
Celebrating World Kidney Day 2015 March 12, 2015 by Lauren Eva Kidney Health for All – that is this year’s theme for World Kidney Day. In celebration of this ideal, and recognition of everyone impacted by the many forms of Chronic Kidney Disease – especially our Nephrotic Syndrome and FSGS Community – we’ve collected some posts from around the web to inform and support YOU. We also ask that you take a moment to be extra mindful of the amazing organs your kidneys are, and the big job they have filtering the waste from our bodies and keeping us healthy. Help them out today with some extra water, a good diet, and some exercise. Keep reading for some helpful links and an infographic that puts a lot into perspective. Yoga for the Kidneys You may know that YogaJournal.com is a wealth of information for anyone who wants to learn more about yoga. Did you know they also feature poses by anatomy? Take a look at their Yoga Poses for Kidneys for a series of movements designed to improve kidney health. Want more? There’s also a video! Namaste. Make Staying Hydrated Fun with the Water Challenge! Keep track of your water intake with this handy printable water challenge log from pepperscraps.com, and stay hydrated every day. Your kidneys will thank you! #SUBCselfie Challenge! Speaking of challenges, have you heard about the #SUBCselfie challenge? Started by members of the NephCure Community, the challenge is simple: take a selfie or make a video about why YOU choose to STAND UP & BE COUNTED to fight FSGS and Nephrotic Syndrome tag it #SUBCselfie post it to your favorite social media site with each video, make a $5 donation to NephCure to help us continue the fight challenge FIVE friends to do the same Learn more from the founder of the challenge here! Chronic Kidney Disease Facts Infographic