Why I Do What I Do: Spotlight on Michael Levine, NephCure Vice President October 2, 2017 by Lauren Eva Michael with his son, Matthew. NKI: How did you first find out about NephCure? How did you get involved? Michael Levine: I think my wife Dana found NephCure on the internet. That was 12 and half years ago, when my son Matthew was first diagnosed with FSGS. I think it was a few months after the diagnosis that we got connected. The first event we got involved with was probably the Countdown to a Cure gala, with Ron Cohen and everybody from New York. NKI: You’ve been involved both directly as a chair for so many of our events, like Countdown to a Cure New York and All In For a Cure on Long Island. What’s been your favorite NephCure event? Michael: Well, each one is different. Quite frankly I love them all, because they all serve a purpose: to create awareness all over the country and the world, and to bring exposure to NephCure, FSGS and Nephrotic Syndrome. And obviously, the events raise dollars to try and create this miracle of a cure. I guess my favorite event is Countdown to a Cure, because NephCure gets to put its best foot forward to so many people. Over 500 people attend, we raise over $600,000, and it’s just a very classy, professional event that is seen by so many families and patients around the country. It gives these patients and families hope. Seeing what NephCure does with that dinner, and meeting families from all over the world, it gives everybody so much hope that if we could do more events like that, a miracle of a cure is attainable. (L-R) Michael’s wife Dana Levine, special guest Cuba Gooding Jr, and Michael at the 2014 Countdown to a Cure gala. NKI: You have raised an incredible amount of money in the 12 years that you have been volunteering with NephCure, on the NephCure board, and chairing for so many events. Does asking for money get any easier with experience? Michael: It never does. The only thing that gets any easier is the knowledge of what we’re doing. Talking about what NephCure does and what our goals and dreams are, that gets easier because I talk about it so much. And telling my story gets easier only because it’s so engrained and enveloped in me. But for me, asking for money is not something that gets any easier. It’s very hard for me to do because I’ve never been a person who is big on asking for help. Many of the fundraising experts say that it should get easier, because you’re asking for money for a very good reason: you’re asking for money to fund a cure and save lives. But for myself personally, it never gets easier. NKI: Is there anything that you think to yourself just before you initiate that first conversation that helps you get past that feeling that it’s going to be tough to ask for money? Michael: Well every time I ask, I say to myself, “Think about all the warriors around the country and around the world battling FSGS and Nephrotic Syndrome.” All the people who reach out to me on Facebook with their families’ and children’s stories. All of the Humans of NephCure stories on Facebook, which I read every single week. You know, sometimes it’s not easy. Sometimes it’s overwhelming. And there are some days that I say, I can’t do this anymore. But then I think about all the families and children that are battling this horrible disease, and I don’t want them to go through the same living hell that my family has gone through over the past 12 years. So that’s my motivation. There are two phrases that I always carry around when I do this. First of all, when I find out that somebody has made a donation to NephCure for an event that I’m a part of, I always write back to them, “You’re an angel on our shoulders. You allow us to dream that a miracle of a cure is possible. You give us hope against the greatest odds, and you give us the strength to fight every day.” I write that to everybody. Matthew Levine, Yankees Manager Joe Girardi, and Michael at a Yankees pre-game press conference this year. I also often write to people, “We are delivering dreams, miracles, wishes, and cures to the warriors around the world battling two devastating kidney diseases, FSGS and Nephrotic Syndrome. These diseases have no cure, and destroy kidneys, families, and lives in their path.” Whenever I think of those things—that’s what motivates me to tell my story to ten people a day, and to ask people for help and to donate money, and to ask people to attend all these events around the country. NKI: What kind of advice would you give someone who wanted to do a big event, like a gala, for NephCure? Michael: The first year is the toughest. You just have to get through that. After the first year, when people see how heartfelt you are and see that you’re trying to deliver dreams, miracles, wishes, and cures, it will get easier. NephCure, FSGS and Nephrotic Syndrome need a ton of awareness and exposure and a ton of dollars. So grab some friends, family and business associates, and say, “I want to save some lives today. I want to create a miracle of a cure for the children and adults battling FSGS and Nephrotic Syndrome.” Whether it’s a bowling tournament, a sporting event, a golf outing, a lemonade stand, a gala, a dinner, just grab some people, form a committee, start having some meetings, and have that committee invite their friends, family, and business associates to the event. It’s like a mushroom, or a plant—it will grow. After you get through the first year, everyone who attends in year one will invite more people for year two, and it just expands. If you want to create a miracle of a cure for FSGS and Nephrotic Syndrome, just create an event. You can do it anywhere in the world. You might not raise that much money, awareness, or exposure in year one. But it’s the stepping stone to years 2, 3, 4, and 5. And maybe by year 4, 5, or 6 you could be like the Tampa Pig Jig, where they’re raising $800,000 and have 6,000 people attending their event. You can’t get discouraged; you just have to fight through it. Just get started. I think that’s the best advice I can give. NKI: You make something that might seem complex to someone who has never done it before seem very attainable and possible. Michael: It’s very possible. You could start an event anywhere, and every dollar you raise brings us one dollar closer to a cure. You’ll get so much out of it, knowing that, and all of your friends and your family can be involved in it with you. And when the event is over each year, the fulfillment of saving lives by doing an event is incredible. I would just like to add that NephCure has been a godsend to my family. With all the events that NephCure puts on—the Nephrotic Syndrome Symposia, the conference in Chicago, and all the walks and events and the visits to Capitol Hill—all these events bring awareness and exposure to the disease, and they allow us to dream that a miracle of a cure is possible. All these events allow us to participate in so much and know that we’re making a difference. The doctors that are involved, the scientific advisory board, everybody at NephCure—my family considers them angels on our shoulders because they give us hope that one day a miracle of a cure can be found. You really are making a difference. And I would just stress to people to get involved. People think NephCure just needs money. And we certainly do. But there are so many other ways to help—with your businesses or your workplace; it doesn’t always have to be money. Money is great, but people can also donate their time, goods, services, and supplies. They would be giving hope to so many people. Just get involved in some way. Michael and other NephCure board members and supporters ring the opening bell at the New York Stock Exchange on Aug. 15th, 2014. We are so grateful and lucky to have someone as committed as Michael on our board. Michael continues to devote an incredible amount of time and energy to NephCure each year. We salute you and your work, Michael! Thank you for your dedication to finding better treatments and a cure for all who suffer from FSGS and Nephrotic Syndrome. The Countdown to a Cure gala will be on Pier Sixty in Manhattan on Nov. 9th at 6pm. We invite you to attend, meet Michael, and help us change lives. You can visit the event page here. If you have any questions, please contact Lorraine Mackin at LMackin@NephCure.org.
DUET Study Releases Preliminary Results (SPOILER it looks promising!) September 7, 2016 by Kylie Karley On September 7, 2016, Retrophin Inc. released the “Top Line” results from their recently completed DUET study, a Phase 2 clinical trial testing safety and efficacy of Sparsentan for FSGS patients. Results showed promise for Sparsentan’s effectiveness at reducing proteinuria in patients with FSGS, with one group of patients seeing an average reduction of 44.8%. The DUET study included 96 patients, and only one serious adverse side effect (anemia) was reported. All patients chose to extend their treatment with Sparsentan during the trial’s open label extension period. Alvin Shih MD, the executive vice-president for Retrophin Inc., said “significant reductions in proteinuria, along with a well-tolerated preliminary safety profile have us excited about being one step closer to providing a new treatment option for patients with FSGS.” NephCure Kidney International is excited about these results and support Dr. Shih’s hope that we are moving closer to providing a new, effective, and safe treatment option for FSGS patients. Mark Stone, Chief Executive Officer of NephCure Kidney International, remarked “These preliminary results are very exciting for our community. This gives us hope that better treatment options will be available for our families in the near future.” NephCure Kidney International would like to thank everyone who contributed time, talent, and resources to this study. Thank you, especially, to the patients and families who participated and helped bring effective treatments within reach. Read the official press release here
August is Advocacy Month August 1, 2016 by Kylie Karley Be an advocate now! Meet with your legislators locally during the upcoming congressional recess to educate them about Nephrotic Syndrome and FSGS and to ask for their assistance with key legislative and policy issues. Background Members of Congress will be in their districts throughout the month of August. Legislators use this time away from Capitol Hill to meet with their constituents in their local offices and learn about the issues impacting the people they represent. Advocates for NephCure Kidney International can use this opportunity to schedule meetings with the local offices of their members of Congress to educate legislators about Nephrotic Syndrome and FSGS and how they can assist and support affected individuals. You do not need to be an expert in government to be effective, you just need to be willing to tell your story. NephCure will assist you with the rest. Taking action is easy: Inform NephCure of your interest in making a local congressional visit by emailing cfix@nephcure.org. NephCure can help you locate the contact information for the local congressional office near you and assist you with scheduling a meeting. Consider making a local visit as a group, with other patient families from your area or with your friends, family, colleagues, or neighbors. Review NephCure’s legislative agenda, and ask us any questions you have about the issues by emailing cfix@nephcure.org. Meet with the local office, tell your story, ask them for their assistance on key issues, provide them with the leave behind materials, and then report back to NephCure by completing this evaluation form. About the Issues Each year, NephCure outlines a federal advocacy agenda that is focused on advancing medical research, facilitating treatment development, and improving healthcare. This year, NephCure has outlined the following issues as part of our legislative agenda: Provide $38.1 billion in fiscal year 2019, a $2 billion increase Provide a proportional increase for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the branch of the NIH that would most directly support NS and FSGS research. Provide a proportional increase for the National Institute of Minority Health and Health Disparities (NIMHD). Minorities are disproportionately affected by NS and FSGS, and this branch of the NIH could provide specific funding opportunities and training programs to benefit the community. Support rare disease research at the National Center for Translational Sciences (NCATS). Continue to include FSGS as a disease eligible for study through the Department of Defense’s Peer Reviewed Medical Research Program As a result of this funding opportunity, over $2 million has gone to FSGS research The NKI community must continue to advocate in order for FSGS to be included every year Co-Sponsor the “Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. 2644)”. This bill is aimed at improving the lives of individuals with chronic kidney disease by supporting research that identifies and eliminates barriers for transplantation This bill allows individuals to retain access to private insurance This bill is promotes access to home dialysis, which is associated with higher quality of life and better health Finally, this bill pays particular attention to chronic kidney disease in minority populations and aims to improvement access to treatment for underserved areas This agenda is comprised of contemporary legislative and public policy issues impacting the kidney community. However, to be successful in your meetings you will not need to remember complicated political information, you just need to tell your story. The materials below can help you have a productive and effective meeting with your Senators and Representatives. Toolkit for Successful Meetings How To Guide for Meeting With Your Legislators NKI 2018 Legislative Agenda Advocacy Letter Template
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
Advocacy in Action: More Funding for FSGS Research! June 16, 2015 by Kylie Karley Remember When… Back in January, FSGS was officially added to the list of conditions eligible for research funding through the Department of Defense’s 2015 Peer Reviewed Medical Research Program (PRMRP). This opened up a new $247.5 million funding source for FSGS researchers. When NKI and our patient families visited Washington DC earlier this year, we advocated to keep FSGS on the list and to increase the funding available for research. More Good News: Last week, the Senate Appropriations Committee approved the 2016 Defense Appropriations budget including $31.2 million in additional funding for the Peer Reviewed Medical Research Program. FSGS made the list of eligible conditions again, so if the bill passes without changes, our researchers will have access to $278.7 million in 2016! What’s Next? The bill will have to be passed by the House and Senate and signed by the President before going into effect. We’ll be tracking it and keeping you updated as it moves through the legislative process. Thank You! Increased funding for research and including FSGS on the list of eligible DOD conditions were two of our “Asks” when we visited Capitol Hill. Thank you advocating in person, writing letters and emails, and making phone calls to increase government awareness of Nephrotic Syndrome diseases and the vital role that government funding plays in finding better treatments and cures! Keep it up and stay tuned for more opportunities to be an Advocate!
Texas Clay Pigeon Shoot Fundraiser- Saturday May 9th in Lindale June 15, 2015 by Lauren Eva On Saturday May 9th, 2015, the Texas Clay Pigeon Shoot held by Baits, Balls & Clays raised $12,000 for Nephcure! Practice shooting and dinner with a live band (Bo Brumble) was held on Friday May 8th. The shoot was held on Saturday May 9th. Check out the photos below: Christian Family with Chad Grubbs (far right) Ashley Christian (Olivia’s mom) and Olivia Christian with Chad Grubbs talk to the crowd about Olivia’s struggles with FSGS [Best_Wordpress_Gallery id=”7″ gal_title=”Texas Clay Pigeon Shoot”] About Baits, Balls & Clays: In 2012 a group joined together to find a creative way to host multiple events that would help donate to charity. They called themselves Baits, Balls & Clays and the charity they selected was Nephcure. In their first year, Baits, Balls & Clays held a golf and fishing tournament, followed by the addition of a clay shooting tournament in the following year. Through their first 3 years Baits, Balls & Clays managed to raise around $20,000, which they donated to Nephcure. In 2013, a special little girl named Olivia was selected as an honorary member of Baits, Balls & Clays, becoming the face of the organization. About Olivia: Miss Olivia is 4 years old and a victim of a rare incurable kidney disease called FSGS. She and her twin sister were adopted into a family when they were young, gaining a mother, father, and 3 older brothers to watch out for them. Unfortunately, a few months after the adoption, when Olivia was only 16 months old, she was diagnosed with FSGS. Her illness caused the filters in her kidneys to stop working, spilling proteins into her body and causing massive swelling. The swelling had dire consequences for Olivia: she stopped walking, talking, playing, eating, smiling, and eventually stopped breathing on her own. In order to stay alive, Olivia went on dialysis and life support. Olivia was fortunate enough to survive with the help of a fighting spirit, and many supporters praying for her. Eventually with the help of various medications, she was stable enough to return home. Before her 3rd birthday, Olivia had undergone 7 surgeries and 12 hospitalizations. She has taken over 40 different medications in an attempt to treat her illness and keep her stable. Unfortunately, due to the lack of research regarding her rare disease, Olivia would be more likely to survive the most common form of childhood cancer than she would ESRD (End Stage Renal Disease), which is a common fatal outcome for patients like Olivia with FSGS. With supporters, Baits, Balls & Clays can continue to raise funds for desperately needed research through the Nephcure Foundation, which is committed to giving 9 out of every 10 dollars raised specifically to research for FSGS and its less aggressive form, Nephrotic Syndrome. Olivia and her family
Test The New ‘My Kidney Buddy’ Mobile App! June 15, 2015 by Kylie Karley Are you buried in paper from all your doctor visits? Ditch the binder- there’s an app for that! As part of the NephCure Kidney Network Patient Registry (www.nephcurekidneynetwork.org) we are developing a mobile app that makes keeping track of your paper medical records a thing of the past! My Kidney Buddy conveniently tracks crucial information such as new symptoms, current medications, and lab values and allows you to easily access them on your smartphone. Additional features include a graphing function so you can better track changes in your lab values over time. The My Kidney Buddy diary feature also allows you to track changes in your diet or if new symptoms occur. Coordinating your care can be complicated and it is important that you and your physician have all your important medical information available. By using My Kidney Buddy, you can be sure that your important health information is recorded and can be easily relayed to your physician… all without the hassle of carrying a heavy binder! We are looking for ‘beta testers’ to try this application and give us feedback on your experience prior to its release to the general public- and we need your help! Help us help you by testing My Kidney Buddy today! Email Chelsey Fix at cfix@nephcure.org for more information.
Jet Food Stores – #Selfies4NephCure Contest May 29, 2015 by Lauren Eva On May 5th, Jet Food Stores hosted their annual NephCure Golf Classic at Twin City Country Club in Sandersville, Georgia. Over the past 12 years, this event has generated more than $350,000 for the NephCure mission. This year’s golf outing saw the introduction of the #Selfies4NephCure contest. Participants took “selfies” of themselves at the event and posted them to their social media pages. Jet Foods and NephCure are hoping that this social media awareness campaign will continue long after the golf outing. Anyone can join the fun and help us spread awareness – so take a picture of yourself, and post it with the hashtag on your Facebook, Twitter and Instagram pages with #Selfies4NephCure. NephCure board member and Jet Food Store President Charles Turner is the driving force behind the event. This cause is important to his family and their goal is to support research to discover and make available better treatments for all families dealing with these kidney conditions. Interested in hosting your own community fundraiser? Whether you’re running in a marathon, giving up your birthday for charity, doing a tribute, starting a walk in your town, or anything else; contact the events team at events@Nephcure.org to raise money for NephCure and make a real-life impact.
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