We need community just as much as we need the people who make up our communities to register to be organ, tissue and cornea donors. As a community one of the most powerful things we can do is disseminate what we learn and share it with others.
When Emma entered the transplantation and donation community, her family didn't know anything about organ and tissue donation until her life was in the hands of a stranger who embraced their fundamental responsibility as a member of our community-- registering to be an organ donor (Donate Life America).
Below, are some of the resources that Emma often refers to for guidance, mentorship and information when she is not sure which direction is North. Please do not hesitate to ask for help or reach out; this shit is hard and know you are never alone (call/text 988 if you or someone you know is in crisis for free 24/7 support).
Donate Life America is "leading its national partners and Donate Life State Teams (Organ Procurement Organizations) to increase the number of donated organs, eyes and tissues available to save and heal lives through transplantation while developing a culture where donation is embraced as a fundamental human responsibility".
Donate Life America has incredible resources for understanding organ, tissue and cornea donation and has a thorough FAQ page that covers a lot of questions Emma had when she woke up from her transplant.
"The United Network for Organ Sharing (UNOS) is the Organ Procurement and Transplantation Network (OPTN) for the United States, that manages the national transplant waiting list."
The nonprofit manages donor matching for the United States through its computer matching system. The matching system uses strictly biological factors that were written by recipients, doctors, and the Organ Procurement and Transplantation Network (OPTN) Board of Directors.” (UNOS, n.d.)
Hearts for Emma is my family's nonprofit that we started about a year after I received my heart transplant in 2012. Hearts for Emma's mission is "to provide assistance to families of children with heart disease and supports educational initiatives relating to heart transplantation and organ and tissue donation" which was heavily influenced by my experience as a pediatric patient.
Some of the bedside initiatives: Beads of Courage Art Therapy Program, meal support for patient's loved ones staying with them in the hospital, care bags for every patient admitted to the PICU and Emma's Closet (a supply closet filled with toiletries).
Registering to become an organ donor takes less than a minute and can save up to 8 lives and enhance the lives of over 75 people. Visit registerme.gov to register you and your loved ones to become organ donors. People as young as 13 can register, although it is not legally accepted until they are 18.
988 is the national crisis hotline that runs 24/7. "When people call, text, or chat 988, they will be connected to trained counselors that are part of the existing Lifeline network. These trained counselors will listen, understand how their problems are affecting them, provide support, and connect them to resources if necessary."
Jen Benson is the founder of The Transplant Journy Inc. and is a kidney and pancreas transplant recipient. Their mission is "empowering individuals and their families with knowledge and guidance to facilitate a positive Transplant Journey while improving the overall experience" using Jen's first-hand experience as patient to guide the way.
The Transplant Journey Inc. can connect you with different recipients to help mentor you along your journey.
Know of a resource that has helped you, but is not listed here? Send Emma a note, she would love to learn more!
Resources Mentioned in #TMTDWMTS
Kate Bowler's No Cure for Being Human was a huge influence on Emma's writing journey. Emma found comfort in the way Bowler vulnerably shares her truths; even when it can be uncomfortable and not guaranteed.
The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me
Keah Brown is a famous author, actor, disability rights advocate, and creator of the #DisabledandCute virtual Twitter campaign. Emma read Brown's work in one of her classes at Syracuse University and references her work in chapter 6-- What is a chronic disease? Who decides?
Rebekah Taussig is a professor, author, advocate, and Instagram influencer. Emma read Taussig's work in one of her Syracuse University Classes and related to the chronic uncertainty Taussig discusses in her memoir.
Podcasts that Emma Found Comfort & Writing Inspiration From
Before writing her memoir, Emma spent time learning ways authors talked about their memoirs and how sharing their stories built communities (both expectantly and unexpectedly).
Below are some of the podcasts that Emma listened to as she took notes, cried, went on long walks, or laid in bed for hours at a time processing the stories she knew she had to share in her memoir.
Unlocking Us with Brené Brown: Accessing Joy and Finding Connection in the Midst of Struggle (March 2022)
Unlocking Us with Brené Brown: Oprah Winfrey and Dr. Bruce Perry on Trauma, Resilience, and Healing (May 2021)
We Can Do Hard Things with Glennon Doyle: Walking Our People Through Hard Things with Kate Bowler (December 2021)
We Can Do Hard Things with Glennon Doyle: What to Do with Our Short, Precious Life with Kate Bowler (December 2021)