TRIO E-News
August 4th, 2020
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Greetings!
We hope this finds you and yours safe in these very challenging times as our Summer seems to be rushing by in very different ways than usual.
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A special 'shout out!" to those who responded to last month's call for reviewers of our PTC (Post-transplant Cancer) web site. We now have a full panel of 30 reviewers who have completed a first assignment and are working on their second, providing user feedback to the site developers.
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NMDAM is a collaborative initiative of the National Organ, Eye and Tissue Donation Multicultural Action Group to save and improve the quality of life of diverse communities by creating a positive culture for organ, eye, and tissue donation. National Minority Donor Awareness Week began in 1996, now expanded to a month-long observance. |
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August is the first annual National Minority Donor Awareness Month |
NMDAM is focused on outreach and education, including virtual events and messaging to:
- Provide education about organ, eye and tissue donation and transplantation
- Encourage donor registration & family conversations about donation
- Promote healthy living and disease prevention to decrease the need for transplantation
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Sincerely,
Jim Gleason
TRIO President
(609) 877-4493
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New in-home blood draw service launched by CareDx
In response to the COVID-19 crisis, CareDx launched RemoTraC: Home-based blood draws for transplant patients. RemoTraC is available to all patients who want their transplant monitoring lab tests to be drawn from the comfort of their home by trained mobile phlebotomists. RemoTraC includes AlloSure and/or AlloMap, CareDx's surveillance tests, along with a panel of routine tests.
Once enrolled in RemoTraC, a CareDx Patient Care Manager will coordinate with your transplant center and contact you by phone to schedule an appointment. Prior to the appointment, we will mail you a test kit. A licensed mobile technician will then come to your home, take a blood sample, and deliver the sample to the lab for processing. CareDx will fully cover the cost of the mobile phlebotomist, and will ensure you pay no additional out-of-pocket expenses beyond what you typically pay for these tests.
TRIO thanks CareDx for the many ways they support our mission.
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This ER doctor and heart transplant survivor wants you to wear a mask |
"On December 21, 2018, I almost died."
So begins the blog Gragossian writes to document her journey with heart disease.
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In the fall of 2018, she was a 30-year-old emergency medicine resident in Philadelphia, young, healthy, accustomed to exercising, playing and working hard.
The first hints of her illness seemed benign -- it started with a cold, then a dry cough that wouldn't go away. Before long Gragossian was having more and more difficultly breathing -- all symptoms eerily similar to today's Covid-19.
This went on for two months, while "like a good doctor, I did nothing about it," Alin said with a wry smile.
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After 20 years, is there finally light at the end of the tunnel?
Hear from Congressional and HHS Staff on the Current Status of the Immuno Bill during our Webinar!
TRIO and the kidney and transplant communities have been fighting to extend Medicare’s coverage of immunosuppressive medications for kidney transplant patients for nearly 20 years. Now with a bill in both the U.S. House of Representatives and the Senate, a united community of advocates, and support from the Administration, we’ve never been closer to getting the Immuno Bill passed.
Join leaders from the American Society of Nephrology, the Honor the Gift coalition, the National Kidney Foundation, HHS, and Capitol Hill to discuss how together, we can FINISH THE FIGHT!
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TRIO to join CareDx for a SPECIAL AlloCare Transplant Festival
Date: Saturday, September 26th, 2020
Time: 9am-1pm PT/12-3pm ET
Pre-Event Contests/Engagements
· Twitter “My Transplant Story”
· Transplant Community Photo Wall Mosaic
· Favorite Recipe Contest
Live
· Community Trivia Challenge
· Talent Show (Judges + Audience Polls)
· Live Performance by Angelica Hale
· Cooking Segment (Celebrity chef will demonstrate a version of winning recipe)
· My Transplant Story Winners
· Photo Wall Mosaic Reveal
· The Engaged Patient/AlloCare App (Patient Panel)
· Transplant and Sports (Patient Panel): Transplant Life and Fitness (David Ayres, John Brockington, and 2 sports stars who are yet to be confirmed)
· Virtual yoga/Meditation (Phelicia Price)
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Invitation: A Cytomegalovirus (CMV) Research Poll |
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Following your transplant, was cytomegalovirus (CMV) ever considered an issue or a complication? We are looking for information from individuals who have had difficulties in managing CMV post-transplant, or who have experienced multiple CMV episodes. If you have experience with this, please complete this short, anonymous poll (three questions only) to help us understand your experience with CMV.
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Couldn't join when those transplant educational webinars were scheduled? You can still view them
(click on above image
to view the latest)
If you haven't experienced those posted virtual events listed in prior issues, try the following and see how enjoyable they can be at TRIO Transplant Presentation Library now with over 114 programs indexed by topic on our website: https://TRIOweb.org under RESOURCES.
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Soliciting Kidney Paired Donation Participants for Research
We are conducting a research study with the National Kidney Registry called Ensuring Informed Decision-Making for Paired Kidney Donation: A National Kidney Registry Education Collaboration. The goal of the study is to better understand the kidney paired donation educational processes for recipients and donors in the NKR.
For the second aim of this study, we are interviewing donors and recipients who were either, in the process of or a part of a kidney swap or chain to learn more about their experiences with KPD education. Although, we have been lucky enough to hear the voices of many donors, we are still looking to interview diverse recipients. Participants who are interviewed will receive a $40 Target gift card as a thank you from our team!
We have been able to interview White patients and are looking to interview 13 additional recipients who identify as either Black, Hispanic, or Other.
In addition, we are looking for recipients with diverse experiences during their KPD process like graft failure, broken chain/swap, delayed matching, unable to participate at the time of the swap due to illness or complication, graft failure within the first 90 days, real-time swap failure, and people with financial challenges, etc.
We would greatly appreciate TRIO supporting us in identifying additional recipients to participate. Interested candidates can complete the brief interest survey below.
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UNOS: Latest COVID-19 News & Resources for Transplant Patients
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Navigating the coronavirus pandemic is difficult for everyone, but brings special challenges for transplant patients. UNOS Chief Medical Officer David Klassen, M.D., answers questions for patients about COVID-19 and the waiting list, inactivation, donor testing and other important topics including videos.
also, another great resource:
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2022 Donate Life Transplant Games!!! |
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Described as the birthplace of California, the city of San Diego has been selected to host the 2022 Donate Life Transplant Games July 29-August 3, 2022. The successful bid was led by San Diego County Credit Union Holiday Bowl. The Transplant Life Foundation is excited to take the Games to the West Coast, and to bring the world’s largest celebration of life to the San Diego community!
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