TRIO National 
Member E-News  
March 2019


yellow-tulip-field.jpg
Spring is almost here again - just wait for it!

****************************************************
Responses to "Opportunity to serve:"  
Last month we invited members to fill two openings on the TRIO national board for the position of Director at Large.   
Responding to that invitation, the board vetted and recently elected two new directors, Pati from California and Lorrinda from Oklahoma, both liver transplant recipients.
 
 
Pati
Click on these pictures to  meet these two new board members.
 
Lorrinda
  
  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 PS: We offer a special thanks to those who shared the news of these opportunities and offered nominees for consideration. 
****************************************************   
If you're nearby . . .
Register for TRIO Maryland's  annual
Sat, April 13, 2019  8:00 AM - 1:00 PM EDT
The Transplant Journey is an educational conference for transplant recipients, patients waiting for a transplant, caregivers, and those considering becoming a living donor. The conference is free and open to the public, but online registration is required. REGISTRATION DEADLINE is April 8th, 2019 Download the Event Brochure. To download the event flyer,  please click here.
****************************************************
2019 Scholarship Application now posted
Click here to learn more and download an application
Is your chapter (or yourself) raising monies to support this program?   
****************************************************     
   
TRIO president
Celebrating my 25th year with a VERY successful heart transplant
thanks to Roberto Cuebas, my heart donor  
GleasonJim@aol.com
(609) 877-4493
Transplant Research Study
couple-computer-banner.jpg

Note: I have taken this survey and talked with the researcher - it's a worthwhile project that I hope you too will support by taking the survey linked below.
- Jim Gleason
 Steve invites you: 
Hello:
 
My name is Steve and I am the family member of a liver transplant recipient. I'm also a prior dialysis social worker and member of my state's organ donor awareness organization. I'm currently working on a research project and need your assistance. There has been very little investigation regarding how people on the transplant waiting list cope with the pending death of their potential donor. I remember in my own family what it was like knowing that in-order for my father-in-law to live -- someone else had to die. No one really spoke to my family about this and my research is going to explore this issue.
 
I have created an anonymous online survey form and need adults who have had solid organ transplants from deceased donors to complete it. It's only 21 questions and it will take about five minutes to finish. I would be extremely appreciative if you would share the following link to the survey form with the post-transplant recipients who attend your support/educational group. Also, please share the link by forwarding this message to group members through email, putting it in your newsletters and Internet sites. Please also share the link with other transplant professionals who have contact with adults who have received organ transplants.
 
This project has been approved by the University of South Carolina's institutional review board (IRB). This is an independent research project. No funding has been provided by the university and they are not responsible for the content of this research.
 
All data collected will be anonymous. I will not be asking for anyone's name or any personally identifiable data.
 
The survey is at the following Internet link:
    
https://www.surveymonkey.com/r/DT8LGHH
 
Thank you for your time and assistance.
Sincerely,
  
Steven Iacono, LISW-CP
  
Email: IACONO@mailbox.sc.edu
 
DOD Grant Reviewer Opportunities
 
Healthcare and Public Health Individuals
Patients, Survivors:
Your Input is Needed on Biomedical Grant Review Panels in 2019!
 
Update: I just received my $1,250 check for participating in this fascinating 3 days of reviewer panel service (note: all expenses are covered separately).  Maybe that financial incentive will peak your own interest?
- Jim Gleason  
 
 
GDIT is contracted by the Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP) to recruit healthcare, public health professionals, patients, and survivors to serve as "consumer reviewers" on panels reviewing biomedical research grant applications. Consumer reviewers act as subject matter experts on their disease, injury, or condition, bringing their experience and perspectives to the evaluation of research grant proposals. Consumer reviewers provide crucial input to the panel, serving alongside scientific and medical experts to represent those most directly affected by the disease, injury or condition.
 
In 2019, CDMRP has many topics seeking consumer reviewers. Specific areas for recruitment are immunomonitoring of intestinal transplants, tissue regeneration, reconstructive transplantation, and hemorrhage control. 
 
Visit https://cdmrp.army.mil/ to view the 2019 programs.
 
For details on the consumer nomination process, contact
Ann Dodelin, ann.dodelin@gdit.com or 240-203-5231
Amber Nalley, amber.nalley@gdit.com or 240-762-4106
Don't miss the opportunity:
UNOS Call for public comment awaiting your feedback . . .
The Org
 
an Procurement and Transplantation Network (OPTN)'s spring 2019 public comment cycle runs through March 22.  
 
Topics for your review and feedback include: 
  • Guidance on Effective Practices for Broader Distribution
  • Modify HOPE Act Variance to Include Other Organs
  • Clarifications on Reporting Maintenance Dialysis
  • Eliminate the Use of Donor Service Areas (DSAs) in Thoracic Distribution
  • Eliminate the Use of Regions in VCA Distribution
  • Removal of DSA and Region from Kidney and Pancreas Allocation (concept paper)
  • Split Liver Variance
  • Expedited Liver Placement
  • Ethical Implications of Multi-Organ Transplants (white paper)
Also . . . 


For the rest of their lives, kidney transplant recipients require daily immunosuppressive medications to reduce the likelihood of organ rejection.  
 
Under current law, however,Medicare covers the cost of a kidney transplant but only pays for anti-rejection medication for three years. After Medicare drops
their coverage, transplant patients who aren't fortunate enough to find affordable insurance are left to cover the cost of the medication on their own.
 
Without immunosuppressive medications to prevent rejection, many patients find themselves back in a risky and frightening place - having to go back on dialysis and in need of a new kidney. The current policy is costly,decreases ESRD patients' quality of life, and fails to honor the sacrifice of the donor.  
 
Everyone loses when a kidney transplant fails because of lack of immunosuppressive medication access. That's why we've joined a coalition to launch Honor the Gift, a campaign aimed at pushing Congress to protect people living with transplants and honor their donors.
 
It's time to ensure Medicare coverage of immunosuppressive medication
for kidney transplant patients. Join the movement - sign up to receive email updates about the campaign: click here  

March 14: World Kidney Day
More than 4,000 people are waiting for a kidney transplant in our region. World Kidney Day on March 14 is the global campaign to increase awareness of the importance of kidneys to our health and to help reduce the impact of kidney disease, which affects one in ten people worldwide.
TRIO congratulates Bob Goodman of the TRIO Philadelphia chapter upon his election as  2019 Treasurer for UNOS/OPTN - taking office in July

Forced Organ Harvesting: Overseas Patients Flocking to China for Transplants
'I didn't know the donor was going to be killed'
Stay Connected with TRIO on-line at http://TRIOweb.org or http://TRIOwebPTC.org and: