August is Advocacy Month August 1, 2016 by Chelsey Fix 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
5th Grade Class Celebrates World Kidney Day! July 10, 2015 by Chelsey Fix On World Kidney Day, a NephCure Kidney International staff member traveled to Stratford Landing Elementary School in Alexandria, VA to speak with a 5th grade classroom about Nephrotic Syndrome. They learned all about kidneys, Nephrotic Syndrome, and the brave patients that are part of the NephCure family. The kids are currently writing to “Pen Pals” to learn more about the journey that our patients experience. (If you are interested in having your child be a pen pal with one of the students, email Chelsey Fix at cfix@nephcure.org) The kids did some wonderful work decorating kidneys to help raise kidney awareness! Check out some of the kidneys below!
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
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 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!
NephCure Presents NKN Poster Session at the National Conference on Engaging Patients, Families and Communities in all Phases of Translational Research to Improve Health August 28, 2014 by Jessica Martin NephCure was selected to present a poster session about the NephCure Kidney Network Patient Registry (NKN) at a national conference held August 21-22 in Bethesda, MD. The goal of the conference, hosted by Duke University’s Translational Medicine Institute, was to present and compare perspectives and examples of methods of engagement in research that include individuals, including patients and families and to generate ideas for sustaining community-engagement in all phases of research. Joanna Dauber, NKN Patient Registry Manager, notes, “Our presentation of the impact of social media in patient engagement was very well received. We had health care providers, scientists and other patient advocates comment on our early success of 200 enrollees in the NephCure Kidney Network patient Registry (NKN) within the first four months of the program. This is considered a robust start for a rare disease community.” Ms. Dauber and Chelsey Fix, a summer intern at NephCure, demonstrated the impact on enrollment after each targeted patient outreach campaign. The most successful method is personalized emails to patient families who have engaged with NephCure in the past (e.g., attended a Walk or a Lunch & Learn/Community Café). New patients respond best to Facebook posts. In addition to providing information about NKN, Ms. Dauber and Ms. Fix took advantage of the conference to meet informally and gain perspective on how other patient advocate groups engage community, especially methods for engaging community-based physicians so that they are comfortable informing their patients to consider enrolling in a patient registry. “An invitation to this prestigious event is not only important to raise NephCure’s profile, but it provides opportunity to learn from others so we can accelerate new research that will lead to better therapies for FSGS and other primary Nephrotic Syndrome disease,” says Marilyn Hailperin, National Director of Research. “We seek opportunities all the time to learn from others’ best practices and incorporate new ideas into our research agenda.” NephCure recognizes that patients’ perspective is important to advancing new research that will improve patients’ lives. The invitation to present at this National Conference demonstrates that NKN is emerging as a leading patient powered research network.
Teens Come Together to Take Charge of Their Health August 8, 2014 by Jessica Martin On Friday, June 6, 2014, a luncheon/meet-up designed just for teens and ‘tweens and their families was held at Nemours/A. I. duPont Hospital in Wilmington, Delaware. It was the first joint venture between NephCure and Dr. Joshua “J.J.” Zaritsky, Nemours Pediatric Nephrologist. The idea for this educational and fun-filled event came from 14-year-old Samantha Buck of Logan Township, NJ. Sam previously attended a Lunch & Learn event (Community Café) and stated, “When can we have a meeting like this for kids my age?” Dr. Zaritsky’s staff along with NCF Department of Education/Engagement Director, Lauren Lee and Patient Engagement Specialist, Sandie Rollins worked to make Samantha’s wish come true. The teens were also invited to join a brand new Facebook group launched for young adults from 13-25, which will be available to join the week of June 9, 2014. The group is called Kidney Strong and it is a supportive community for teenagers and young adults who have FSGS and Nephrotic Syndrome. It was a beautiful day and much of the event was held outdoors in an enclosed courtyard with a flowing fountain. The educational portion of the day included: the newCommunity programs sponsored by NephCure for patient families, information/explanation of patient-powered registry, the NephCure Kidney Network (presented by Abbey Swan, NephCure Operations and Grant Administrator), Healthy Eating tips presented by Nemours Registered Dietician, Megan O’Neill, and a parents-only session on Coping with Chronic Illness presented by Nemours’ Social Worker, Jessa Lewis. The teen/ ‘tween fun and recreational events included a Quizzo tournament, arts and crafts, Make-A-Friend Bingo plenty of laughs and some great NephCure and Nemours SWAG as a parting gift. In the end, everyone left with a new sense of community, and a commitment to finding better treatment options and a cure for FSGS and Nephrotic Syndrome.
Yoga For A Cure Fundraiser August 8, 2014 by Jessica Martin Every year on June 21 we celebrate the summer solstice, the longest day of the year and the official start of summer. The summer solstice is celebrated in many parts of the world with day-long festivals bringing communities together. This year, the community of Sleepy Eye found another way to celebrate the summer solstice, and help NephCure Kidney International. Kris Luebbert, certified yoga instructor and owner of Sky Blue Yoga, led a group of students and supporters in an outdoor yoga practice to raise money for NephCure. All-in-all, over $500 was raised. Read more about the event here. Want to host your own fundraiser? We can help! Contact us at events@nephcure.org for more information.