Recently I had the opportunity to sit down with Sharron Rousse, a kidney transplant recipient, advocate and the founder of Kindness for Kidneys, to discuss her journey of existing both personally and professionally within the transplant space. She has such a unique perspective, and story, and the kind of personality where, despite never having had a one on one conversation, it felt like we were old friends.
Sharron, who was born and raised in the Washington Metropolitan area outside D.C., was working in education as a school counselor when her first symptoms of kidney disease arose. After a “meet the teacher” night at the school where she worked, Sharron experienced swelling in her legs. It didn’t go away with rest, and she decided that after the following workday, she’d go to the ER. The plan was to work the entire day, but when Sharron arrived and connected with the school nurse, they advised her to clock out early and head to the emergency room immediately. Sharron said the event happened so fast and is a clear memory in her mind; after numerous tests performed at her local ER, a nurse pointed out that her kidneys were failing. Sharron, who had been diagnosed with lupus in 2003, had no indication there was anything wrong with her kidneys, but as more information was relayed to her, she began to wonder about the accuracy of her lupus diagnosis, and whether or not it was her kidney issues in disguise, resulting in the damage having gone unnoticed for so long.
She was transferred from her local hospital to John Hopkins, where she underwent more tests. The most likely option was that Sharron’s kidney disease was linked to lupus, but when she walked out of the hospital a week later with a diagnosis of FSGS (Focal Segmental Glomerulosclerosis: a rare disease attacking the filtering units of the kidney) the gravity of the situation became more apparent. Sharron was young, with no family history of the disease, having just given birth to her daughter a few months prior. This, she said, was the kind of thing that happened to other people. She was given a steroid cocktail, a combination with damaging side effects to her wellbeing, and did her best to resume a normal life in the face of a devastating diagnosis. It held her numbers at bay for a while, until 2011 when bloodwork revealed her numbers had begun to take a turn for the worse.
For Sharron it felt like a slow decline. She tried every alternative therapy in the book, sought second and third opinions. When it became apparent that dialysis was necessary, and a surgery date was booked to place a peritoneal catheter, she didn’t show up.
Instead she sought another opinion. She saw another doctor who ordered more tests, and one day the phone rang. It was that doctor, asking her how she was doing as her labs had come back and her hemoglobin was critically low. Sharron had reached the point of no return.
She remembers being in that hospital room, praying not only for her life to be spared, but also that she would someday be able to use her experience to help others. “My mindset shifted from focusing on me to helping others,” she said.
At this point peritoneal dialysis was no longer an option, and a perma cath was placed. Sharron began dialysis, and the journey of looking for a kidney donor began.
It was discovered that Sharron’s sister was a perfect match to be her kidney donor, but unfortunately the road was not that simple. The pair went through 5 transplant dates before the transplant was successful. The first date was rescheduled due to Sharron contracting an illness, the second and third because her sister had hemoglobin issues which made the surgical team uncomfortable. Sharron’s sister underwent bone marrow biopsies and saw multiple different doctors, and while Sharron tried to tell her sister that this wasn’t necessary, that she’d find another donor, her sister made it clear that this was her mission.
After months of waiting, the 5th surgery date was a go, and Sharron received her kidney transplant. It was on the 5th anniversary of their successful transplant journey, in December of 2018, that Sharron and her sister started Kindness for Kidneys. While she wasn’t clear exactly or what she wanted this to look like, Sharron wanted to give back to the community that gave her so much. She met with a team, tossed around ideas and applied for grants. They developed the ultimate mission of the organization: to educate, empower, and encourage other transplant patients and kidney warriors in their community and beyond. Sharron saw a need not only for patients to be knowledgeable about what was happening to their bodies, but also for caregivers to be involved. Conversations need to be had among families and in community circles, while at the same time encouraging representation within the transplant community.
“When it’s coming from someone that looks like you, you’re more apt to listen,” said Sharron. The African American community in particular is taught to be strong, to do what you need to do, and the approach Sharron found was one tailored to white presenting individuals. These conversations, she found, not only help those dealing with kidney disease, but also can also help prevent the disease entirely.
Kindness for Kidneys began with donating care packages to dialysis patients during the holidays. Their story quickly caught the attention of a local news crew, and within only a few years they were able to expand their Christmas hampers to multiple different dialysis locations. Just before the COVID-19 pandemic, Kindness for Kidneys started in-person support groups. They quickly had to alter the plan, but this unexpected detour was a blessing in disguise that took their support groups online, and global. The organization is now branching back into in-person support for patients and their caregivers, focusing on thriving with your condition and teaching on topics such as diet and mental health.
I asked Sharron where she wanted to be in 5 years time, and her first focus was on maintaining the vitality of her transplanted kidney. After recently transitioning into being self-employed, she is hopeful for a thriving business as she focuses on education and health consulting. Her ultimate goal for Kindness for Kidneys is to create a one-stop-shop wellness hub for kidney disease patients and their families, both in her local community and beyond.
You can connect with Sharron on Transplantlyfe, where she is an active member of our community. Their website is kindnessforkidneys.org, and they are on Instagram, Facebook, Twitter, and YouTube @kindnessforkidneys.
The Sweetest Gift is headed by Patricia Scheetz, herself both a chronic illness warrior and transplant recipient, having received a kidney and pancreas transplant in 2011 after battling with type 1 diabetes since birth and many of the disease’s insidious complications since her early 20’s.
Patricia is a qualified pastry chef, and discovered her passion for baking whilst recovering from her transplant surgery, fast forward several years and this passion catapulted Patricia onto Australian TV as a contestant in 2016 on Zumbo’s Just Desserts, which now airs on Netflix.
Discovering her life’s purpose to help people in similar situations to her own came after realizing that her dream of running her own dessert restaurant would be that much sweeter if she could support people just like herself, so that they didn’t have to go through the same employment struggles that she had been forced to, and so The Sweetest Gift was born.
Sharyn Kreitzer has 25 years of experience in the transplant field in both the private sector and VA programs. She developed a special interest in living kidney donation and has devoted her career to help increase access to living kidney transplants particularly for underserved communities.
In 2015, Sharyn helped launch the 7th kidney transplant program within the VA Healthcare System. While there, she realized the tremendous potential to tap into a vast military support system to launch a veteran-centric organ donor awareness program.
In 2020 Sharyn created Donor Outreach for Veterans, Corps (DOVE) a nonprofit organization with a mission to facilitate matching altruistic donors with Veterans awaiting transplant in the United States.
Sharyn’s clinical skills as a former transplant social worker, combined with her many years of experience in outreach, program development and administration has enabled DOVE to thrive in its first two years and has saved the lives of 21 Veterans since its inception.
Sharyn runs DOVE out of her home in Montclair, NJ where she lives with her partner, Thomas, her children, Nathan and Naomi, and their Labrador Retriever, Scout. In the last month, Sharyn has become a living kidney donor. She couldn’t be more proud to join this tremendously special group of people.
Dr. Scalea is a multi-organ transplant surgeon, innovator, and entrepreneur dedicated to saving lives. He is a professor of surgery and immunology and thought leader in transplantation. As a high-energy healthcare leader, he has a passion for building large, empowered teams that seek to dream big, improve efficiency, and exceed goals.
As an entrepreneur, Dr. Scalea co-founded 2 companies: MediGO, a healthcare supply chain technology company and MissionGO, an unmanned aviation and services organization. These rapidly growing ventures won the Thomas Edison award and MediGO was recognized by FAST Company magazine as a World Changing Idea.
Surgically, Dr. Scalea has worked with, built, and led some of largest organ transplant programs in the country. He is presently the director of kidney transplantation at MUSC, which performs 400+ kidney transplants per year. He has been nationally recognized for the highest quality pancreas transplant program in the United States, while also driving the highest volumes. He is presently Vice Chair of surgery where he helps faculty members understand the commercial potential of surgical innovations.
Within transplantation, Dr. Scalea and his quality teams are working hard to help centers scale operative volumes without sacrificing quality, by leveraging technology to enhance the peri-transplant workflow. Alongside bioinformatics experts, his quality team efforts are directed toward building tools that automate patient medical record analysis to instantly generate lists of patients who could be at risk for graft failure, tools for bidirectional patient communication, and enhanced patient education strategies.
Dr. Scalea is the Executive Medical Director for MUSC Health Solutions, an organization that assesses and commercializes internal technologies as well as early stage external technologies. In this role, Dr. Scalea helps guide MUSC Health Innovation strategic investments, and he guides technology development and implementation. Current investment activities include innovations in mobile-first patient-centered telehealth platforms, sleep science innovations, various MedTech concepts, and a technology-leveraged concierge surgical care model for elite athletes.
Dr. Scalea has led multiple Innovation and scientific ventures including the conceptualization, design, and development of the first platforms for monitoring and moving human organs. He envisioned, built tech for, patented, and subsequently performed, the first-ever transplant of a human organ moved by drone. This innovation was featured in the NYT, Fox, CNN, WSJ, JAMA-Surgery, and other scientific outlets. The media around this event went viral, generating more than 10M views in <48 hours, and with a PR reach touching an estimated 1 B people.
Beyond commercialization, Dr. Scalea is an NIH-funded director of a translational immunology laboratory and has published more than 80 peer-reviewed articles. Beyond studying organ logistics, Dr. Scalea is interested in eliminating the needs for anti-rejection drugs in transplant patients using novel fusion proteins which leverage the suppressive capacity of MDSCs.
Dr. Scalea is a loving father and husband who loves to paint and sail when he is not operating.
Genevieve C. Springer has a B.S. in Education, a Minor in Violin performance; a M.S. in Leadership and Policy from Vanderbilt University; and is now in the dissertation phase of her doctoral degree in Public and International Affairs. Her research interests hover at the intersection of democratic accountability, justice, public agency performance, and equitable health and social policy across regions. Professionally, she has served as project manager at Vanderbilt University’s Peabody College, an educator in both public and private schools teaching and designing interventions for at-risk youth, a researcher, humanitarian, and team leader. Grateful to be raised in a supportive close-knit family of creative entrepreneurial spirits. Genevieve in recent years has become increasingly and unapologetically driven to pursue goals that only call upon those skills and strengths meaningfully supported by her natural inclinations to create innovative lifesaving solutions. Genevieve’s most cherished leisure time is spent with her son Mateo, parents Terry and Bob, and Pitbull Susie in Chapel Hill, N.C.
Driving visions, actions, impact, and collaborations within biotech & life science to discover new opportunities and to develop better treatment opportunities. Entrepreneur, focusing on helping transplant patients live their life again. Synklino strives to provide rapid relief as well as to improve long term survival for transplant recipients by providing fast and safe eradication of cytomegalovirus (CMV) infections. Synklino’s drug candidate SYN002 efficiently eliminates both lytic as well as latently infected cells, and thereby potently inhibits viral replication and eradicates the virus – simply taking CMV out of the equation for the transplant recipient.
“I am always working to build and develop the strongest team, for what we are about to accomplish – focusing on our ability to execute our ambitious plans. At the same time relations to people, and working with committed, courageous, and skilled people is the greatest single motivating factor”.
Rory is a Preclinical Scientist at Ochre Bio’s New York based lab, where he focuses on deep phenotyping perfused human livers. A physiologist by training, Rory’s PhD research involved identifying key proteins involved in nonalcoholic fatty liver disease development. This led him to a postdoc at the National Cancer Institute, studying how hepatic mitochondrial dynamics are perturbed during the onset of liver disease. Rory originally hails from Galway in Ireland, before coming to the US for graduate school in 2014 to complete his MS at Central Michigan University, and PhD at the University of Missouri.
NEW YORK and NORTH CAROLINA, September 19, 2022 /PRNewswire/ — Lyfebulb, a patient-empowerment platform that connects patients with industry experts to support user-driven innovation, and Veloxis Pharmaceuticals, a fully integrated specialty pharmaceutical company, are pleased to announce 10 finalists for the 2022 “Transforming Organ Transplantation Through Innovation” Challenge.
“We are grateful for the opportunity to partner with Lyfebulb and are encouraged by the tremendous response to the Innovation Challenge, and the solutions our finalists have developed for this unique patient population,” says Mark Hensley, CEO of Veloxis, an Asahi Kasei company. “Veloxis shares their collective energy and dedication to the transplant community, as we continue to invest in solving the many unmet needs that remain in transplantation.”
The finalists, who were co-selected by the Lyfebulb and Veloxis Pharmaceuticals teams, have brought forward promising innovations to improve the lived-experience and outcomes for transplant recipients and their loved ones. The potential impact on patients and their care partners, as well as the feasibility and sustainability of innovations in the market, were considerations in the selection of the following finalists:
- Isabel Portero, MD, PhD, CEO and founder, Biohope Scientific Solutions for Human Health
- Rory Cunningham, PhD, pre-clinical scientist, Ochre Bio
- Dalton Shaull, CEO and founder, OmniLife Health
- Thomas Kledal, PhD, co-founder and CEO, Synklino A/S
- Genevieve Springer, PhD, founder and CEO, Organ-AI
- Nick Housby, PhD, co-founder and CEO, Accunea Ltd.
- Joseph Scalea, MD, co-founder and CMO, MediGO, Inc.
- Chet Bennett, founder and CEO, C Alan Foundation
- Sharyn Kreitzer, founder & executive director, Donor Outreach for Veterans, Corp. (DOVE)
- Patricia Scheetz, founder & CEO, The Sweetest Gift
“We are very excited about the diverse group of finalists that we’ve selected to work towards bringing innovation to transplantation,” said Karin Hehenberger, MD, PhD, founder and CEO at Lyfebulb. “They have already shown strength in their commitment and creativity, and we are looking forward to the impact that their work will make on patients and care-givers everywhere.”
The finalists will be joined by industry leaders spanning business, venture capital and health care industries for a two-day summit in Cary, N.C. Each finalist will present their solutions to an expert panel of judges on October 13-14, 2022. The judges include:
- Mark Hardy, MD, PhD (Hon), FACS, Auchincloss Professor of Surgery, Director Emeritus and founder of Transplantation Program at Columbia New York-Presbyterian Hospital
- Shelby Hansen, transplant recipient, Lyfebulb patient ambassador and health coach
- Howard Kim, MD, managing director, corporate venture capital at Asahi Kasei America
- Glenda Roberts, director, external relations and patient engagement at UW Kidney Research Institute/Center for Dialysis Innovation; chief strategy and operations officer – Justice, Equity, Diversity and Inclusion Center
- Greg Lewis, president and managing partner at Calcium
Prizes will be awarded to two finalists to further grow their companies. The Innovation Award will be presented to a for-profit company and include a $25,000 monetary grant. The Impact Award will be presented to a not-for-profit company and include a $15,000 monetary grant.
To learn more about the Lyfebulb-Veloxis Innovation Challenge, visit Lyfebulb.com.
Veloxis Pharmaceuticals, Inc, an Asahi Kasei company, is a fully integrated specialty pharmaceutical company committed to improving the lives of transplant patients. Headquartered in Cary, North Carolina, USA, Veloxis is focused on the global development and commercialization of medications utilized by transplant patients and by patients with serious related diseases. For further information, please visit Veloxis.com.
About Asahi Kasei
The Asahi Kasei Group contributes to life and living for people around the world. Since its foundation in 1922 with ammonia and cellulose fiber business, Asahi Kasei has consistently grown through the proactive transformation of its business portfolio to meet the evolving needs of every age. With more than 40,000 employees around the world, the company contributes to sustainable society by providing solutions to the world’s challenges through its three business sectors of Material, Homes, and Healthcare. Its healthcare operations include devices and systems for acute critical care, dialysis, therapeutic apheresis, transfusion, and manufacture of biotherapeutics, as well as pharmaceuticals and diagnostic reagents. For further information, please visit Asahi-Kasei.com.
Lyfebulb is an innovation accelerator that bridges the gap between patient communities and the healthcare industry by working directly with patients and care partners to generate insights and build new solutions to reduce the burden of living with chronic disease. The company operates two digital patient communities, TransplantLyfe and IBDLyfe. For more information, visit Lyfebulb.com, TransplantLyfe.com, IBDLyfe.com, Instagram, LinkedIn, Twitter, Facebook, and Karin Hehenberger’s personal LinkedIn.
For more information:
Oak & State Communications
Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1 917-575-0210