The ESRD NCC will present a June 2, 2020 Patient Town Hall on You Too, Can Manage Transplant. Patients will share their experience with pre-transplant preparation, recovery, and adjusting to life after receiving a transplant. For details see below:
UCLA will present a May 17, 2020 Virtual CORE Kidney Health Fair and virtual 2K/5K Spirit Walk/Run. For more information and registration, see https://www.uclahealth.org/CORE-kidney/ and the poster below:
NKF will present a May 2, 2020 half-day series of five webinars for patients on current kidney-disease topics called Virtual Education Series: Connect, Learn, and Share. You can choose any or all of the 30- to 45-minute sessions, and they’ll be recorded for later viewing. The topics are:
- Coping with a Chronic Illness: Dealing with Emotions and Finding Support
- Tips for Kidney Friendly Eating on a Budget
- Fitness and Kidney Health
- Telemedicine 101: What to Expect When Seeing Your Doctor at Home
- Let’s Talk about Transplant: Real Patient Stories
Each webinar will be co-led by a healthcare professional and a patient. Find more information and register at https://www.kidney.org/events/local-event/virtual-education-series-connect-learn-and-share.
NKF and Swedish Medical Center will present an April 25, 2020 four-hour workshop on Lifestyle & Kidney Health: Diet, Exercise, Weight Loss and Beyond. Topics will include nutrition, diabetes, blood pressure, fitness, and transplant preparation. Lunch will be provided. See below for full details:
The Renal Support Network has published a podcast called Keep on Believing, featuring an interview with America’s Got Talent superstar and kidney transplant recipient (at age 4) Angelica Hale. Angelica advises, “Never give up and keep on dreaming. Keep on believing in yourself. No matter what you are going through, you can still achieve your dreams and reach your goals.” Find the podcast at https://www.rsnhope.org/kidneytalk/keep-on-believing/.
Home Dialysis Central has published a blog post on the “invisible” disabilities that often afflict ESRD patients. The Medical Education Institute has commissioned a self-adhering window sticker for your car that says “Invisible Disability,” with the idea that you can just point to the sticker rather than trying to explain yourself whenever you are questioned about parking. Ordering instructions are included in the article. We didn’t read the post in time to announce it before or during, but this past week was 2019 Invisible Disabilities Week. Find out more from the Invisible Disabilities Association at https://invisibledisabilities.org/seminarsandevents/invisible-disabilities-week/attachment/2019-invisible-disabilities-week-is-here-oct-13th-19th/.
AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions. To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used. Find the survey at https://www.surveymonkey.com/r/GGTZNKX.
Gary and Yalonda Moore are both members of the Comagine Health ESRD Alliance Network 16 Patient Advisory Council. They were recently featured on Anchorage television station KTUU. Gary is on home dialysis while waiting for a transplant, and frequently recommends home dialysis to other people with ESRD, especially in Alaska, where frequent travel to one of Alaska’s nine clinics can be difficult at times. He usually stocks more than a month’s worth of dialysis supplies at home, so he’s prepared for emergencies. Yalonda is a member of the National Forum of ESRD Networks’ Kidney Patient Advisory Council, and in her role there also frequently advocates home dialysis. Find their TV spot and accompanying story at https://www.ktuu.com/content/news/Anchorage-family-highlights-obstacles-associated-with-kidney-disease-in-Alaska-513320711.html.
MEI’s Home Dialysis Central blog has an interesting post on Laugh Out Load Hemodialysis, which Satellite Dialysis has been experimenting with. Among other things, the post describes the physiological benefits of laughter, including its positive impact on mood, pain, lungs, cardiovascular function, and immune response. Find the post at https://homedialysis.org/news-and-research/blog/305-laugh-out-loud-hemodialysis-lol-hd-improving-the-dialysis-experience-at-satellite-healthcare/. While the subject of the post is in-center dialysis, anyone with an internet connection and computer or smartphone who dialyzes at home can call up a million comedies to watch. See also https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/DPC/DPCLaugh2019.pdf for information on a May 26, 2019 webinar on Pain Relief through Laughter.
NKF and PKG will present a March 3, 2019 Patient & Community Education Symposium in Portland OR on Lifestyle Makes a Difference: Controlling What You Can. Registration is recommended because space is limited. For details see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/NKF.EdSym.PKG0319.pdf.