Nephcure would like to share this new site, created and brought to you by University of Michigan. iNsider (Mykidneyguide.org) is the latest interactive way to log your patient journey and get tools and tips for the latest hurdle regarding Nephrotic Syndrome. iNSider is a tool built to help support patients and families on their journeys with Nephrotic Syndrome. It was designed with input from nephrologists, patients, and parents of children with Nephrotic Syndrome. We encourage you to check it out, register and use this easy and convenient conduit to understanding your disease.
Please register for Parents’ Place-Back to School 101 Webinar on Aug 05, 2015 8:00 PM EDT at:
Going back to school can be exciting yet stressful. Add chronic illness and special considerations into the mix and it can be overwhelming! Join us for a FAQ session with other parents who have become “experts” at sending their children back to school and ensuring they have proper care.
After registering, you will receive a confirmation email containing information about joining the webinar.
For the fourth year in a row, Team Will – an amazing team of family and friends – ran the Chicago Rock ‘n Roll Half Marathon July 19th to raise money for NephCure. The first year the team consisted of 11 close friends and family. Every year the number of runners have grown, as well as the funds raised and increased community support. This year we had over 70 runners for Team Will and NKI raising more than $25,000.
Everyone got into the act, funds came not only from online personal donations, but also corporate sponsors, community lemonade stands, cookie sales, cupcake sales, a CrossFit fundraising event, a birthday party donation jar, etc.
“As we are learning, this is a very unpredictable disease, and we do not know what the outcome will be for Will. We are grateful to have found NephCure Kidney International, and with them are committed to seeking a cause and cure for Nephrotic Syndrome.” – Tony and Mary Ann Diaz
We’d like to thank our event sponsors: Physician Anesthesia Associates, Martin Nissan, Lydon & Associations, Hollister, MK Capital, Blue Mountain Brewery and Little Bad Wolf.
There’s still time to donate to Team Will at support.nephcure.org/chicagornr.
For more information about Rock ‘n’ Roll events near you, or other Nephlete fundraisers, contact us at firstname.lastname@example.org.
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:
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.
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.
RSN’s 13th Annual Essay Contest Begins!
THIS YEAR’S THEME: “How Have You Used Your Experiences to Give Hope to Others with Kidney Disease?”
First Prize: $500
Second Prize: $300
Third Prize: $100
Last Years Winning Essays Below!
“People who live successfully with a chronic illness like kidney disease know firsthand the importance of having an innovative perspective not only toward their illness, but also toward life in general. There is an abundance of talent within the renal patient community, and the RSN Essay Contest provides people who have CKD with a forum where they can share their experiences, strength, and hope, as well as inspire others.”
– Lori Hartwell, RSN President and Founder
Click here for previous winners.
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.
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
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