HRSA Living Donation Support letter campaign

From TRIO's Public Policy committee:

Instructions for writing a letter to HRSA

These instructions are supporting a letter writing campaign encouraging HRSA to fund research promoting living kidney donation on a par with that done already for deceased donor promotion. They provide direction for using the accompanying template letter of support for increasing living kidney donation which you can download by clicking here:

Please feel free to customize it as much as you’d like – the more, the better. The template is meant to be as easy as possible to send (you only need to fill in the highlighted parts, name, address, etc.), but the more you can personalize it, the more impact it will have.

In particular, please consider talking about your experience in the field of transplant, your thoughts on safeguards that exist to protect kidney donors and ensure their informed consent, why living donation is important to promote, and your reasons for writing this letter.

Please make sure to email the letter to This email address is being protected from spambots. You need JavaScript enabled to view it. and either cc or forward it to This email address is being protected from spambots. You need JavaScript enabled to view it.. By sending to us, we’ll be able to track who’s reached out to HRSA and from where. You should also send a hard copy to Walsh’s address in the attached letter, but you don’t need to wait to send the hard copy before emailing.

Our goal is to get five hundred letters sent by February 1st. Please let us know anyone else who might be interested in signing that we should reach out to. Would you be interested in asking your friends, family, or colleagues to send letters? Each one helps to get the government to support living donation.

We plan on eventually sending the letters we receive to congressman and senators: please let us know if you’d prefer we didn’t do that.

We really appreciate your help! I know it seems small, but it truly makes a difference. This is an important first step in building a home for living donation in the federal government and making meaningful progress towards ending the waitlist. Thank you!

This email address is being protected from spambots. You need JavaScript enabled to view it., TRIO Public Policy committee co-chair
This email address is being protected from spambots. You need JavaScript enabled to view it., TRIO Public Policy committee co-chair


A well-informed caregiver
(Lifelines article)

As it appeared in the Fall 2014 Lifelines newsletter:

A well-informed caregiver with appropriate emotional support is essential to the well-being of the transplant patient.

Like most caregivers to loved ones pre- and post-transplant, we had a lot of questions and longed for support and understanding. We were unable to find a group dedicated to the transplant caregiver and felt our needs were not being met on the many forums dedicated to transplant patients. That is why we founded a Facebook group, Transplant Caregivers – Partners for Life, on September 8, 2013.

Our goal is to provide a safe haven designed exclusively for caregivers of loved ones pre- and post-transplant. Our virtual forum is the platform for discussions on the unique circumstances, challenges and opportunities faced during each phase of the transplant process. Most importantly we have created a community to help others know that they are not alone on this extraordinary journey called transplant.

We have found that the role of the transplant caregiver is different from other types of caregiving. Pre-transplant, we do not have the opportunity to process our emotions as other caregivers. We do not go through the natural steps to eventually accept that the end is near. We are stuck in limbo, just waiting. The reality is that we are watching our loved ones slowly deteriorate as life slips away and yet they might be fortunate to be the recipient of a life-saving gift. Post-transplant our situations are unique; we need to learn so much. It’s a drastic change from pre-transplant medication and diet changes, learning to understand new symptoms and understanding the psychological and emotional hurdles. We need to shift gears and let our loved ones become more independent. We need to remember that how we treat our loved one has everything to do with their emotional and physical recovery. But most of all, we have to learn to live again! We’ve been given a second chance, a gift that can only be repaid by being dedicated to taking care of our donors’ gift(s) and bringing awareness to the cause.

To date, our forum consists of over 550 caregivers from all over the world. They are caring for loved ones at different phases of the transplant process and in need of different types of transplants. We are inspired each day by the heartfelt stories provided by our members. Topics on the page vary from day to day. A typical day may consist of discussions on general emotional support, questions on how to successfully fundraise, what to expect during the transplant evaluation process etc. We have enough representation that each question or comment is addressed by a member who can provide helpful insight and support. We are grateful that we have a mechanism in place to help others by sharing similar life changing experiences. We are all ordinary people thrown into extraordinary circumstances.

If you are a caregiver of a loved one pre- or post-transplant, please join and share your extraordinary journey, knowing that you are not alone.

To join, send an email request to This email address is being protected from spambots. You need JavaScript enabled to view it. and go to:

Renee Ambrosio-Alexander (Caregiver)

I will always remember that fateful night my fiancé called me from the hospital to tell me, “They found a match.” Though we had many plans to tie-the-knot, chronic illness has a way of interfering with life events, but we held on to our dreams. We were married bedside at 3:00am in the hospital on the eve of his transplants.

Our lives have changed a great deal during this 17 year battle. At times, it has been heart wrenching, impossibly difficult, filled with overwhelming uncertainty and isolation and yet remarkably rewarding. We are blessed to have a second chance and to possibly grow old together. Personally, my life has been affected in profound ways. When I stopped asking why did this happen and started searching for what I could learn from these challenges, everything changed.

This journey called Transplant has been and continues to be a road of hope. My goal is to help other caregivers by providing them with the resources needed to navigate through the different stages of the transplant process.


LeeAnn Fitzgerald (Caregiver)

Three and a half years ago my husband, after 6 years of living with chemotherapy-induced cardiomyopathy, found out that he needed a new heart. As I had done with his cancer diagnosis and with his heart failure diagnosis, I put on a brave face and went into caregiver mode. I had nobody to talk to who would understand - nobody to tell me that it was ok to feel frustration, exhaustion and I only felt guilt. For the caregiver in the transplant community, the thanks are many, but the resources are few. Since then, I have done what I can to help other caregivers through the inspiration of my husband’s success story, and through understanding and emotional support.

Author Bios:

Renee Ambrosio-Alexander is a marketing healthcare professional with over 24 years of experience across the healthcare spectrum, including 14 years in the pharmaceutical industry. She is one of the founders of “Transplant Caregivers – Partners for Life,” a virtual forum where she and others mentor caregivers of loved ones pre-and post- transplant. She is caregiver to her husband, who received a dual heart and kidney transplant in 2013. Renee resides in Doylestown, PA with her husband and two rottweilers.


LeeAnn Fitzgerald worked as an elementary school teacher for many years before she decided to apply her experience to interactive project management in the pharmaceutical industry. She is caregiver to her husband, Derek, of 14 years who has since gone on to compete in endurance events such as marathons and triathlons (including 2 full Ironman triathlons), however the greatest gift that has come from his gift of life has been the birth of their daughter, Emma, in January. She co-founded “Transplant Caregivers – Partners for Life” so that others could find the support that she longed for during her journey.

LeeAnn Fitz banner


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October 28, 2014

Webmaster contact: Jim Gleason (609) 877-4493 or e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.


Board meeting Agenda & notes Dec 17th, 2015

At the board's annual meeting held December 17th, 2015, there were exciting discussions about board challenges both financially and leadership wise in the year ahead.

The meeting's agenda with edited notes see (bold italicized font text) follows:

TRIO Board of Directors
Annual Board Meeting

Thursday December 17, 2015
Meeting by conference call 8:00 to 9:30pm EST

v 8:00pm - Opening greetings – prayer - welcome new board members & guests

v President’s report (Jim)

  • Financial challenges ahead - completing another challenging grant drought year, the recent 'special appeal' and several last minute unanticipated revenues in just the last few days may result in a 'break-even' year with income matching expenses (more details in reports below)
  • CAB formation - Similar to the existing MAB (Medical Advisory Board) consisting of medical professionals, this newly appointed "Corporate Advisory Board" will serve as a consultant resource to the national board consisting of non-medical community members; retiring current national board members Mark Jackson and James Mateiko have accepted appointment to this group with Mark serving as its chair. Both Mark (service of 6 years) and James (service of 4 years) were thanks by the board for their service and on-going support in joining the new CAB

v Secretary’s report - approval of the Sept 19th board meeting minutes (Elizabeth)

v Treasurer’s report (Susan)

  • Financial report for 2015
  • Finance committee’s proposed budget for 2016 - calls for focused grant efforts and optimistically projects a $10k revenue in excess of expenses
  • Discussion on distributing of TRIO financial data (Steve) - board agreed to distribute full year financial highlights in the February Annual Report that goes out to all chapter presidentsalong with several other actions resulting from discussion
  • Board member donation support (Steve)
  • Membership special donation appeal - partial results to date are very promising and along with strong board member donations and unexpected corporate and chapter fund raiser 10% incomes, and several 'checks in the mail' it is looking very hopeful that the "Urgent" message of Dec 3rd may in fact help close the $11k deficit outlook at that time. A special thanks for everyone who contributed and offered ideas that is making this possible. More details to be released after 2015 books close in a few weeks.

v MSD report (Sylvia)

  • Chapter membership/dues report for 2015 (vs. prior years/trends) - with all active chapters dues finally in (2 finally arriving just a day ago) membership numbers continue to track level compared to recent years.
  • Grant committee report - unanswered 2015 grant applications have been replaced with new 2016 applications to address new corporate 2016 funding opportunities
  • Discussion of grant revenue opportunities/improvement (board)

v Nominating committee report (Jim)

  • Nomination slate for 2016 officers – open for nominations from the floor - no additional nominations were offered, so the existing officers were put forth as the voting slate
  • Voting for 2016 officers - same officers from 2015 were unanimously re-elected for 2016 (Susan: Treasurer; Elizabeth: Secretary; Steve: Vice-president; Jim: President)
  • New board member nominations - with retirement of James Mateiko and Mark Jackson (both opting to serve on the CAB), the board voted in two new board members, Henry David from Clifornia, and James Bulalrd from northern New Jersey - see thier profiles on the web site under Board membership and CAB members)

v MAB report on AMA activity forecast (Tom Peters) - MAB chair, Tom Peters summarized recent activity within the AMA looking to support studies of financial incentives for organ donation as a means of increasing donation rates, currently not meeting the demand of transplant candidate needs.

v Strategic Plan focus 3-C’s topics:

  • Chapters: Improving TRIO Chapter health (Ron & Jim)
    • Vote to revoke NE Florida chapter charter for multi-year inactivity - the board voted to revoke the NE Florida chapter's charter based on no activity for past two years and loss of leadershisp contact; efforts are underway to recover any remaining chapter funds as provided for in the TRIO chartering by-laws
    • Chapter development progress (Ron)
    • Revitalization of Chapter Council
    • Chapter health interview form
    • Chapter responsiveness
  • Communications: Insuring effective membership communications
    • Facebook activity update (Susan)
    • Constant Contact E-News distribution/readership analytics (Jim)
  • Cancer: PTC (Post-transplant Cancer) project (Phases 0 & 1)
    • Financial support: Grant and special appeal report (Sylvia)
    • Web site content development progress report (Jim)
    • PTC site promotion at AAKP conference (Sept 24th thru 27th) - as noted on the TRIO web site with photos, the September TRIO PTC workshop and tabling event in Nashville at the Fall AAKP conference launching our new PTC web site was a huge success; also noted the redesign of the site with patient PTC success stories/photos

v Public policy committee update (Rodger)

v Old business

  • Board member engagement/committee assignments/elections/rotations

v New business/OPEN discussion

  • Breaking the 80/20 rule – opening a discussion on TRIO engagement
  • Special guest, Lisa Kory, TRIO Executive Director from pre-2000 days, spoke about the upcoming Rose Parade annual float where her husband will be riding with floral grams honoring his wife and daughter, both organ donors from unrelated accidents years ago; Lisa was urging eveyone to watch and promote viewing of the Rose parade and this DLA float.

v Meeting feedback and 2016 board meeting schedule (survey results) - our 4 2016 meetings will be scheduled based on an upcoming Doodle calendar survey along with the location selection for the annual face-to-face meeting - suggestions are most welcome

v Closing (9:30pm) - meeting closed at 9:40pm


TRIO Opinion Papers Topics

TRIO encourages open dialogue on current issues related to organ donation and transplantation.

Current and past Opinion Papers include:

> Support of Study of Financial Incentives for Organ Donation
.......Press release

TRIO Members are welcome to submit, read and respond to Opinion Papers following the guidelines below.

Criteria for submission:

    • Papers will be accepted only from current members of TRIO. Membership will be verified through TRIO’s database, as either a currently paid Member-at-Large or a paid Chapter member.

    • These writings should be professionally presented and may address any transplant-related subject of interest to the general public.

    • The articles should be professional in nature, presenting an opinion on a transplant-related issue.

    • If the article is ‘personal’ in nature but presents an opinion in a professional manner, it may be accepted; alternatively, the writer may be referred to a different posting opportunity.

    • While this is not a peer-reviewed posting, the subject matter and acceptability of individual papers will be reviewed and approved by a member of the Communications Committee, TRIO National’s Managing Services Director and the TRIO webmaster.

    • The writings must be original. Reprints will not be posted. These papers will be posted as “.pdf” files and can be downloaded from Please do not include more than one photo or graphic with your opinion paper. Use of extensive graphics, which consume a large amount of space, may preclude the article from being accepted.

    • Articles will not be edited nor re-formatted prior to posting. Submissions should be formatted by the author for readability. Submissions are limited to 2,600 words, including space consumed by graphics and photo. This equates to approximately four pages of material, in total. No additional space will be allowed for author’s biographical material; that must be included in the specified, acceptable length. It is suggested that submissions be prepared in MS Word or similar or, preferably, submitted as .pdfs.

    • Only electronic submissions will be considered for posting.

    • Opinion Papers will be listed alphabetically, by author’s last name, followed by a Title (maximum title length in author’s listing is 20 words). The author is encouraged to provide the ‘author’s listing’ title. This listing will appear on a ‘cover page’ entitled “Posted Papers.”

    • All published papers must identify the author by name.

    • The length of time a paper remains posted on is at the discretion of the Web Subcommittee.

    • By submitting a paper for consideration, the author agrees to all stipulations of the above “Criteria for Submission.”


Any paper published on is accepted as the personal opinion of the author and does not represent the opinion of Transplant Recipients International Organization, Inc. (TRIO), its officers, directors or members.

By submitting a paper for review, the author stipulates that the paper is original and not reprinted from any other publication, whether in hard copy or via the internet.

All contents of the Opinion Papers presented in this section of trioweb, including text, graphics, images, information obtained from other sources and contributors and any other material, are for informational purposes only and not intended to be a substitute for medical advice, diagnosis or treatment. Neither nor TRIO recommends or endorses any specific tests, physicians, products, procedures, opinions or other information appearing in an Opinion Paper shared on

Neither TRIO, Inc. (TRIO) nor have any rights to provide permission for reprint, nor hold any interest in copyright of the published Opinion Papers.

By submitting an Opinion Paper, the author agrees to the above Disclaimer.