“My name is Caroline and I have a heart transplant.” It was my answer to the question my professor had asked- “State your name and one cool fact about yourself for the class”. It was the first time I sat in a college classroom in over three years. I could feel my cheeks flushing pink when it came time for me to answer.
I am used to making speeches for crowds of adults, for other disabled people, and regularly speaking to at least one healthcare professional a week. But when I went back to college as someone who had beaten cancer with a port still in my chest, as a heart transplant recipient, and as a disabled person in a colorful wheelchair, I had no idea how new people my own age would receive me. I remember telling myself before the first day of school that I would not bring up all of the “complicated” stuff until people got to know me. I wanted to have an opportunity for people to see me, and not just see what I’ve been through.
There are so many other interesting things about myself, but I found myself saying “I have a heart transplant” as my “cool fact”. It was a split-second decision, I’ll admit that. I didn’t know why I chose that until later when it hit me- if I was going to truly start fresh, I didn’t want to hide a single part of me. No feeding into that ‘be the cool mysterious girl movie trope’ type (because what does that even mean). I am a very out there person; I find it near impossible to shrink to hide who I truly am. Though when I looked around the room after my statement, I saw the pairs of students sitting together, and in realizing that I sat alone, I worried that I had made a mistake.
At the college I attend, we have an accessibility counselor, who told me a few weeks into school about a group of students who were trying to start a Disabled Students
Union on campus. I went to the first meeting as Secretary of the union, again not knowing how I would be received. I was greeted by the most welcoming group of people who were so unashamed of being themselves. I immediately felt safe.
We all had such different disabilities, but we all bonded over commonalities like medications we had been on and our experiences of our lives being so intertwined with hospital stays and doctors. We ranted over viewpoints and labels we hated being imposed on us. They became the first college friends I made in nearly four years. I left each meeting feeling closer and closer to the person I always wanted to be after my transplant- shameless and loudly proud.
Over time, I became more involved with things like the Student Government and the Student Diversity Council. Each time I spoke in front of my peers, my cheeks got less pink and my voice shook less. My outfits got more and more colorful, I wore my blue heart-shaped glasses to class often, and my confidence in not only my transplant life soared, but also within my own voice. I wasn’t so afraid anymore. I noticed more of my peers would complement my wheelchair wheel colors that I would change out weekly, and it became easier to connect with strangers. By the time April rolled around, I decided I wanted to do something kind of bold.
April is National Donate Life Month, and I wanted to bring it to my campus. I organized a card drive, where cards would be decorated by students and sent to a hospital for transplant patients and donor families. I also decided it was time to put my voice to use. I enlisted the help of a close friend who has a heart transplant and a faculty member (who later also became a friend) that had donated a kidney to a stranger, to speak in front of students with me. To my surprise, students showed up with genuine curiosity; the event was a success. I felt so incredibly proud.
When I went back to school, I feared I would not make a single friend. That no one would care about transplant life. I was so thankful to find that people did care. I was not only accepted by my peers with open arms, but I made some of the best friends I
could ever ask for. My new friends make me transplant-friendly ice cubes in cute little shapes and always check my diet requirements before giving me food they made. It’s so simple, but it means more to me than they’ll ever know. My lifelong protector and best friend, Cassidy, would tell you that she was right- she knew the right people would find me. I even found some self-acceptance along the way. Next year, I will serve as the President of the Disabled Students Union, being voted in by my peers. I have so many plans on how to bring organ donation and disability awareness onto campus, knowing there are wonderful people who will care about it.
The entire experience of going back to college as a transplant recipient has taught me a few things. What I’ve been through is such a big part of me and there’s no shame in that. Doing it scared, even if your cheeks flush and your voice shakes, is something to be proud of. That self-acceptance is right around the corner if you stop shrinking yourself to fit a self-imposed limitation. But the biggest lesson of all? If you live in truth, if you live as who you truly are, the right people and the right path will always find you.
My name is Emmitt Henderson III, and my journey with Lupus has been anything but ordinary. Diagnosed over three decades ago, I’ve faced countless battles, but none more life-altering than the fight against kidney failure, caused by Lupus Nephritis, that has changed the course of my life. After enduring multiple hospitalizations, organ failures, dialysis treatments, and near-death experiences, I found myself on a mission, not just for healing, but for hope. That hope came in the form of searching for a living kidney donor.
Out of this complicated journey, I created Male Lupus Warriors Corp, an organization dedicated to empowering men living with lupus and chronic illness. I wanted to create a space that wasn’t available for me during my struggles. Through my platform, I’ve had the honor of advocating nationwide speaking at conferences, attending policy events like Rare Kidney on the Hill Day, and educating communities about organ donation and health equity. My advocacy has earned me awards and recognition, but the real reward is knowing that my story is helping others rise through their health struggles.
I’ve traveled across and outside the country to share my truth, connect with fellow warriors, and amplify the voices of those often overlooked. And now, I’m proud to say I’m also an author, using storytelling to leave a legacy of strength and transformation.
I didn’t know I had a story till I told my story and this is my space to reflect, educate, and inspire. This is how I turn my pain into power.
You’re Invited – Join Us!
The TransplantLyfe–Temple 2025 Patient Summit is a free event for:
People waiting for an organ transplant
Current transplant recipients
Care partners (family or friends who help care for someone)
Organ donors
Health care providers
Anyone who wants to learn more about transplant
This is a full day of learning, sharing, and connecting. You can join in person or watch online.
What to Expect
This is not a medical lecture. All sessions will be in simple, everyday language.
You’ll hear real stories from patients and families, and get practical tips from healthcare providers that you can use right away.
Examples of topics:
Getting Ready for Transplant – What to expect and how to stay on the list
Living Donation – How to find a donor and ask for help
Life After Transplant – Staying healthy, managing medicines, and finding support
The Future of Transplant – New ideas, research, and hope for patients
Breakout Sessions – Choose from small-group talks on:
Managing medications & side effects
Mental health and emotional strength
Tips and resources for care partners
We’ll also have time for questions, networking, and meeting others who understand your journey.
Why Attend?
Learn from patients, doctors, nurses, and experts who care about your success
Get tools and advice you can use at home
Connect with others who share your experience
Join the conversation about making transplant care better for everyone
How to Join
It’s FREE, but spots are limited
Click here to RSVP now to save your spot
If your plans change, please email Jamie@Lyfebulb.comso we can give your spot to someone else
While virtual attendance is an option, we highly recommend attending in-person to get the most out of this event
Event Logistics
Marriott Philadelphia West
111 Crawford Ave, West Conshohocken, PA 19428
Phone: (610) 941-5600
Lunch: Free lunch is provided
Parking: Free parking is provided
Thank You To Our Gold-Level Industry Supporters
We are an innovative global healthcare company, driven by one purpose: we chase the miracles of science to improve people’s lives. Our team, across the world, is dedicated to transforming the practice of medicine by working to turn the impossible into the possible. We provide potentially life-changing treatment options and life-saving vaccine protection to millions of people globally, while putting sustainability and social responsibility at the center of our ambitions.
Eledon Pharmaceuticals is a clinical stage biotechnology company with immunology expertise that is developing therapies to protect and prevent rejection of transplanted organs, as well as to treat amyotrophic lateral sclerosis (ALS). The Company’s lead compound in development is tegoprubart, an anti-CD40L antibody with high affinity for CD40 Ligand (also called “CD154”), a well-validated biological target with broad therapeutic potential.
Thank You To Our Gold-Level Non-Profit Supporters
Eledon Pharmaceuticals is a clinical stage biotechnology company with immunology expertise that is developing therapies to protect and prevent rejection of transplanted organs, as well as to treat amyotrophic lateral sclerosis (ALS). The Company’s lead compound in development is tegoprubart, an anti-CD40L antibody with high affinity for CD40 Ligand (also called “CD154”), a well-validated biological target with broad therapeutic potential.
Thank You To Our Silver-Level Supporters
Eledon Pharmaceuticals is a clinical stage biotechnology company with immunology expertise that is developing therapies to protect and prevent rejection of transplanted organs, as well as to treat amyotrophic lateral sclerosis (ALS). The Company’s lead compound in development is tegoprubart, an anti-CD40L antibody with high affinity for CD40 Ligand (also called “CD154”), a well-validated biological target with broad therapeutic potential.
Brought to you by
Lyfebulb is a patient engagement platform. Our mission is to reduce the burden of living with chronic disease through the power of the patient.
Temple Health has a history of excellence when it comes to organ transplantation. Our program performed Philadelphia’s first heart transplant in 1984, and since that time we have performed over 2,500 organ transplants.
Over the last three decades, Temple physicians, surgeons and medical staff have dedicated themselves to providing the best quality transplant care, consistently meeting or exceeding the national survival rates. In addition, our surgeons have pioneered methods to improve organ donor health and avoid post-transplant complications. The Temple Transplant team is dedicated to helping patients live longer, better lives.
The iBox Scoring System is a novel composite biomarker endpoint predictive of long-term graft survival after kidney transplantation
On track to be the first qualified reasonably likely surrogate endpoint in transplant for use in the FDA accelerated approval pathway
FDA aims for a 10 month review of the Full Qualification Package
MOUNT LAUREL, N.J., July 30, 2025 /PRNewswire/ — The American Society of Transplant Surgeons (ASTS) and American Society of Transplantation (AST) announced today that the Transplant Therapeutics Consortium (TTC) received notification from FDA of the Reviewability of the Full Qualification Package (FQP) for the iBox Scoring System, a novel reasonably likely surrogate efficacy endpoint for kidney transplant clinical trials. The FDA Drug Development Tool qualification program aims to communicate the final decision within 10 months targeting April 2026. The Full Qualification Package is the final step in the FDA qualification process and iBox scoring system is the first transplant endpoint to reach this stage of qualification.
Improving the long-term survival of transplanted kidneys is an important area of unmet need for transplantation recipients. The current efficacy failure endpoint has typically shown non-inferiority of immunosuppressive regimens but the iBox Scoring System is proposed to be used to demonstrate the superiority of a new agents compared to the standard of care as a co-primary endpoint in pivotal drug therapeutic studies. As a reasonably likely surrogate endpoint, the iBox scoring system would be used in the Accelerated Approval Pathway at the FDA designed to allow for earlier approval of drugs that treat serious conditions and fill an unmet medical need.
“It’s not surprising that using a clinical trials endpoint that is nearly four decades old has been a significant impediment to the development of new therapeutics for maintenance immunosuppression and has contributed to the relatively stagnate long-term outcomes of kidney transplants. I applaud the FDA for working with the TTC to develop the iBox as a coprimary endpoint for clinical trials in kidney transplantation. We have recognized the strong push from the patient community for new agents that promote both longer survival of transplanted organs and improved safety and tolerability. I hope that this is the first of many collaborative efforts to validate and implement new drug development tools to achieve that end,” said Kenneth Newell, MD, PhD, Professor of Surgery, Emory University and Executive Committee Member of the TTC.
Paul T. Conway, Vice President and Chair of Policy and Global Affairs, American Association of Kidney Patients (AAKP) and a 28-year kidney transplant recipient stated, “For decades, bipartisan national policy priorities, across multiple presidential administrations and Congresses, have included transplantation and sustainable long-term transplant outcomes as a means for saving more lives, protecting livelihoods, and reducing patient and taxpayer burdens. Yet, due to policy barriers, the transplant drugs patients currently depend upon to avoid organ rejection and a return to the transplant waiting list have failed to evolve and pose serious risks to both organ recipients and grafts. AAKP is optimistic that recent FDA action on the iBox is a signal the agency is putting transplant patients first, accelerating transplant drug development and re-aligning internal FDA decision-making to better advance long-standing American policy priorities.” Conway previously served as the inaugural Chair of the FDA’s Patient Engagement Advisory Committee for medical devices.
“We celebrate this step toward a regulatory process that will allow for many more drugs to enter into the transplant drug development path. The patient community has been starved of new approaches to keep their precious grafts alive and thriving for a longer time, with fewer side effects and complications. As a person living with transplants derived from selfless individuals, I can speak for the transplant patient community in applauding this progress toward our goal of leveraging modern day science to achieve one transplant for life,” said Dr. Karin Hehenberger, President Lyfebulb, and a kidney and pancreas transplant recipient.
About iBox
The iBox scoring system is a composite endpoint that utilizes multiple clinically relevant features (estimated glomerular filtration rate (eGFR), proteinuria, anti-human leukocyte antigen donor-specific antibody, and kidney graft biopsy histopathology) at one-year post-transplant to predict 5-year graft survival. The iBox scoring system (NCT03474003), has been developed and validated in a landmark publication released in the BMJ by a team of researchers led by Professor Alexandre Loupy in Paris French NIH (Inserm), APHP and Université Paris Cité, comprising 7557 patients from 10 academic centers from Europe and the US and 3 Randomized controlled trials.
About FDA Accelerated Approval
The FDA Accelerated Approval Program is designed to facilitate and expedite development of drugs that treat serious conditions, and fill an unmet medical need based on a reasonable likely surrogate endpoint (RLSE) that is supported by strong mechanistic and/or epidemiologic rationale. The Qualification of the iBox would allow it to be used as a RLSE for accelerated approval of novel new immunosuppressants for kidney transplantation. The Accelerated Approval program has historically been successful advancing new innovative therapies for HIV and cancer and most recently promoted the introduction of 4 new drugs for IgA nephropathy, a chronic kidney disease with no approved therapies 5 years ago before the use of proteinuria as a surrogate endpoint.
About TTC
The Transplant Therapeutics Consortium (TTC) is a public-private partnership with the FDA founded in 2017 by the American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS). This collaboration unites the transplant community, industry leaders, and regulatory agencies dedicated to the development of innovative tools, methods and processes for facilitating advancement of new innovative therapies to improve the lives of solid organ transplant recipients.
This submission of the FQP was accomplished by employing the resources of the TTC members and engaging with FDA throughout the biomarker qualification process. TTC is supported through funding and input from the AST*, ASTS*, argenx*, Arkana Laboratories*, Bristol Myers Squibb*, CareDx*, Critical Path Institute, CSL, CTI Clinical Trial Services, Inc.*, Eledon*, European Society of Organ Transplantation, the U.S. Food and Drug Administration (FDA), Hansa Biopharma*, HUS Helsinki University Hospital, Immucor, KU Leunven, Memo Therapeutics AG*, Natera, National Institutes of Health, Novartis, Paris Transplant Group, Pirche, Sanofi*, Takeda*, Talaris Therapeutics, Thermo Fisher Scientific, The Transplantation Society, Transplant Genomics*, University of Manitoba, and Veloxis Pharmaceuticals*. Any groups that would like to join in this effort or have information or data that may contribute to further advances, can contact JoAnn Gwynn at jgwynn@myast.org.
*Denotes Current TTC Members
The Transplant Therapeutics Consortium (TTC) was launched in April 2017 and co-founded by the American Society of Transplantation (AST) and the American Society of Transplant Surgeons (ASTS). TTC brings together pharmaceutical companies, diagnostic companies, academic and nonprofit partners working toward a common goal of moving the field forward toward drug development solutions in transplantation.
American Society of Transplantation
Founded in 1982, the American Society of Transplantation (AST) is a non-profit, 501(c)3 organization dedicated to advancing the field of transplantation and improving patient care by promoting research, education, advocacy, organ donation, and service to the community through a lens of equity and inclusion. The society is the largest transplant organization in North America (consisting of nearly 5,000 professional members), representing a majority of the nation’s medical professionals engaged in the field of transplantation.
Learn more at myAST.org.
American Society of Transplant Surgeons
The American Society of Transplant Surgeons (ASTS) was founded in 1974 by 127 surgeons to unite the professionals who were advancing the fledgling field of organ transplantation.
From this small group of dedicated individuals, we have grown to represent over 2,000 transplant professionals who are dedicated to saving and improving lives through the transformative power of organ donation and transplant surgery. Learn more about ASTS by visiting our website at ASTS.org.
When I joined TransplantLyfe, I expected to find information and maybe a few people who understood what I’d been through. What I didn’t expect to find was Jeanmarie, a best friend, a soul sister, and living proof that hope and strength don’t just survive – they thrive when shared.
We connected through our transplant journeys, each of us carrying a story marked by loss, healing, and the fight to keep going. But what truly bonded us was something deeper: a shared passion for advocacy, a fierce desire to turn pain into purpose, and the comfort of knowing that someone else just gets it.
From late-night check-ins to spontaneous New York City adventures, our friendship became its own kind of medicine. One of my favorite memories is the day we took a bike tour through Central Park. With the wind in our faces and laughter echoing between the trees, it felt like reclaiming life on our own terms. It was a celebration of every moment we’ve fought to live.
Whether we were shopping at Tiffany’s or simply breathing in the magic of the city, we weren’t just passing time; we were honoring it. We were honoring every heartbeat, every second chance, and every moment our transplants gave back to us.
Jeanmarie’s strength inspires me daily. Even on her hardest days, she lifts others up. Her voice fights for the unheard, and her joy reminds me that light still lives in the hard places. She’s the friend who remembers the dates that matter, who checks in without being asked, and who makes you feel seen in a world that sometimes overlooks transplant warriors.
Our friendship is a reminder that healing doesn’t always come through medicine or milestones. Sometimes, it shows up in a person who walks beside you, believes in your tomorrow, and never lets you forget that your story still matters.
So if you’ve ever wondered what hope and strength look like… It’s not just from survival, but from a connection.
By: LaVise McCray
by Karin Hehenberger
I have lived three lives – at least.
My first was as a child – never worried about the future and only focusing on the now. I fought hard in sports and in school, but I was not wanting for much more than that. I did not have an inkling of how lucky I was. My parents tell me I was always smiling and always on the move.
Then came Type 1 Diabetes. Like a truck, it wheeled over me and I felt damaged and alone. I managed it conservatively and, while doing so, ruined the very part of me that was happy and free. T1D felt like a prison.
One day I just said “stop”. I started living freely and irreverently. Nothing could stop me. I was young, well-educated and out to conquer the world. Of course, this lifestyle was not sustainable. The complications hit me worse than the diabetes had as a teenager and now I was not just damaged through my disease but also through my behavior.
Transplantation saved my life three times but my daughter, Liv, makes my life worth living each day. Without her, I would not have been able to return to feelings of happiness and freedom from paranoia, control and thoughts of giving up.
Today, on Independence Day, I celebrate freedom, in all shapes and forms. It might be a day without pain, a walk after not being able to, advocacy to push for change for more than just yourself, courage to share your thoughts and dreams, or simply smiling in the morning when waking up.
by Karin Hehenberger
I have lived three lives – at least.
My first was as a child – never worried about the future and only focusing on the now. I fought hard in sports and in school, but I was not wanting for much more than that. I did not have an inkling of how lucky I was. My parents tell me I was always smiling and always on the move.
Then came Type 1 Diabetes. Like a truck, it wheeled over me and I felt damaged and alone. I managed it conservatively and, while doing so, ruined the very part of me that was happy and free. T1D felt like a prison.
One day I just said “stop”. I started living freely and irreverently. Nothing could stop me. I was young, well-educated and out to conquer the world. Of course, this lifestyle was not sustainable. The complications hit me worse than the diabetes had as a teenager and now I was not just damaged through my disease but also through my behavior.
Transplantation saved my life three times but my daughter, Liv, makes my life worth living each day. Without her, I would not have been able to return to feelings of happiness and freedom from paranoia, control and thoughts of giving up.
Today, on Independence Day, I celebrate freedom, in all shapes and forms. It might be a day without pain, a walk after not being able to, advocacy to push for change for more than just yourself, courage to share your thoughts and dreams, or simply smiling in the morning when waking up.
Lyfebulb Founder and kidney-pancreas transplant recipient Dr. Karin Hehenberger and TransplantLyfe Community Manager Kevin Schnurr sit down with Craig Pressley, LICSW, a seasoned transplant social worker at Beth Israel Deaconess Medical Center, to break down the financial realities of kidney transplantation.
Whether you’re pre- or post-transplant, this session offers a clear, accessible overview of:
Common transplant-related costs—from evaluations to lifelong medications
How Medicare Parts A, B, and D apply to transplant patients Commercial insurance, coordination of benefits, and supplemental coverage
Why applying for Medicare matters—even if you have private insurance Tips for finding trustworthy insurance information
This is Episode 1 of our transplant cost and insurance series, designed to equip patients and care partners with tools to better plan for the future.
Watch now and don’t forget to subscribe for updates on Episode 2, where we’ll explore real-world patient examples and financial assistance options. Learn more at TransplantLyfe.com and join our discussion forum to continue the conversation.
The Most Common Cancer in Immune-Suppressed Individuals
In 2024, more than 48,000 organ transplants were performed in the United States. Although solid organ transplant (SOT) is a life-saving treatment, unfortunately, recipients have elevated risk for many cancer types due to the medications transplant recipients take to avoid rejection of their new organ.
The highest increase in cancer rates for SOTs are most frequently associated with skin cancers. The immunosuppression medications (Tacrolimus, Mycophenolate, Cyclosporine, Azathioprine and others) impair the capacity of the immune system to repair UV-damaged cells, allowing these damaged cells to develop into cancers.
The four main types of skin cancer in organ recipients are:
Squamous Cell Carcinoma (SCC): 100x higher risk
Merkel Cell Carcinoma (MCC): 24x higher risk
Basal Cell Carcinoma (BCC): 16x higher risk
Melanoma: 2x higher risk
Monitoring
Symptoms of skin cancer include new bumps or patches on the skin, or changes in the size, shape or color of skin growths. Frequent self-exams and (full body) screening examinations performed by a dermatologist are recommended for all SOTs. Generally speaking, an annual exam is sufficient. However, if any SCC is suspected/discovered during an exam, more frequent checks by a transplant dermatologist may make more sense (3/6/9-month intervals).
When performing self-exams, all skin should be checked for any changes in size, shape or color of skin growths or the development of new skin spots. This includes the scalp, ears (including on the insides), palms of hands, soles of feet, between toes, genital area and the area between the buttocks. Skin cancers may even manifest inside the eyes. Mirrors, magnifying glasses and even taking photographs can help to identify changes in skin over time.
Treatment
Most skin cancer is treatable if it’s caught early. Treatments include Mohs surgery, cryotherapy, chemotherapy and radiation.
The most common treatment for SCC is having the Mohs procedure/surgery performed. This procedure involves removal of thin layers of cancerous skin, one at a time. Each layer is examined under a microscope until normal tissue is found. Sometimes multiple sessions may be necessary. Unfortunately, the removal of tissue often leads to deficits that might require reconstructive surgery. Non-cancerous spots/markings that are identified may be “frozen” (cryotherapy) to destroy the affected cells. Early detection and treatment are critical for managing skin cancer, post-transplant.
Prevention
In most cases, skin cancer can be prevented. The best way to protect ourselves to avoid too much sunlight and sunburns. It is very important to implement effective sun protection strategies which most certainly should be prioritized. Some strategies include using broad-spectrum sunscreen with an SPF of 30 or higher, wearing protective clothing and sunglasses, avoiding the sun during peak hours, and steering clear of tanning beds. However, much of the damage detected in an adult has been caused by sun exposure as a child, which is the reason why skin cancers in non-transplant recipients also occur to a higher extent in the elderly.
Transplant recipients wear a badge of honor everyday of their lives and are grateful to their organ donors and donor families for making the Gift of Life available to them. Prevention and close monitoring are key to avoid adding the term “cancer survivor” to the list of medical conditions.
Two years ago, I wasn’t sure what the future would hold. Sitting upright felt like running a marathon. I relied on a wheelchair to get around, and even the simplest tasks left me exhausted. Yet amid that uncertainty, one thing remained: hope. Hope is made possible by the life-changing gift of organ donation.
Recently, I completed my very first 5K walk.
That moment wasn’t just about miles. It was about the meaning behind each step. Every stride I took was a powerful symbol of resilience, gratitude, and transformation.
My transplant journey has been anything but easy. It’s been filled with moments of fear, physical setbacks, and emotional weight. There were days I wasn’t sure how I’d keep going. But I chose to rise anyway. With the unwavering support of my medical team, my family, and the transplant community, I kept moving forward—one step at a time.
Walking that 5K wasn’t just a personal milestone—it was a tribute. A tribute to my donor, whose selfless gift gave me a second chance at life. A tribute to those still waiting for their miracle. And a message to the world that life after transplant is not just possible—it’s powerful.
To anyone facing a health battle of their own: don’t give up. Don’t count yourself out. Your body is capable of incredible things. Your spirit, even more so. With faith, determination, and a circle of support, healing can happen. I am walking and living proof of it.
My journey is far from over, but that day, I walked with strength, with purpose, and with deep, unshakable gratitude.
