Born and raised along the shoreline of California, Caleigh has spent the last decade living in San Francisco. Diagnosed at birth with cystic fibrosis, Caleigh maintained her health through sports and social activities. Despite her best efforts to balance health, career, and happiness, she found herself battling diabetes and end-stage lung disease, frequently hospitalized, sustaining nutrition through a feeding tube, breathing with the help of supplemental oxygen and bi-pap and in need of a double lung transplant. In order to financially and mentally survive the isolating nature of her situation she began chronically her journey and beginning her own legacy through her blog and now foundation, Fight2Breathe. A year after her first transplant, Caleigh experienced severe rejection and was in desperate need for a second life-saving double lung transplant. She moved to Los Angeles and spent 6 months living in the hospital while waiting for her surgery. Since receiving her new lungs, she lives an independent and successful life achieving new goals every day – including being a wish granter for the Make A Wish Foundation and public speaking for other organizations such as the Cystic Fibrosis Foundation, Global Genes, One Legacy, Donate Life, and Sick Chicks. She celebrates others through helping those who are in similar situations any way possible.
Brandon Mouw was just three- years-old when diagnosed as a Juvenile Type 1 Diabetic. His journey with diabetes is a survivor’s story. Growing up to become a brittle diabetic, he underwent nine surgeries, lost a kidney, told that death was imminent, and raised over $250,000 to pay for a life-saving pancreas-only transplant.
My name is Lara. I am a marriage and family therapist in California and I specialize in working with young adults living with chronic illness. My work with chronic illness has been motivated by my own health concerns. I lived with chronic heart failure for 5 years and last year I received the ultimate gift, a heart transplant. These experiences transformed me and my work, too. I provide space to those of us who are learning to live with a chronic illness, who are grieving at times, and who are trying to navigate life while honoring our health concerns. I am honored to work with individuals towards the goal of living an authentic, happy, and content life, despite and in congruency to, their medical conditions.
Amanda DeJesus is a heart transplant survivor and Chef. She graduated from The Art Institute of Houston in Texas. She is currently a co-host of the Podcast Unfiltered Survivors. Amanda’s goals are to use her creative talents, training and devotion to living a healthy life and incorporate her passion of food and nutrition to enhance her life and the life of other heart patients. Amanda served as one of the 2017 National Go Red Spokeswomen for the Go Red for Women campaign and volunteers with the American Heart Association, LifeGift and Donate Life America.
Jeanmarie was diagnosed with Lupus Nephritis when she was 16 years old. At the age of 24 she received a kidney transplant. The gift of life selflessly came from her father. Jeanmarie experienced Acute Cellular Rejection and successfully underwent treatment to save her transplant. Currently she is being treated for Antibody Mediated Rejection with monthly IVIG treatments. It has been quite the balancing act with Lupus, transplant, medications, doctors, family and friends but she still maintains an active outdoor lifestyle. Jeanmarie loves hiking, traveling, writing and photography and she enjoys bringing the outdoor experience to everyone with her photos. Since the transplant 14 years ago, she found the key to her success has been through a plant-based diet, exercise and positive attitude. It has been challenging for people to understand she does not carry her illness on the outside, but on the inside. She does not “look” like how she feels. Jeanmarie has a passion for helping others with her extensive knowledge navigating through transplant life.
Jennifer White was diagnosed with chronic kidney disease in her early 20s. She was on dialysis for a few months before receiving a kidney transplant in 2008 from her mom’s friend. Jen is also a master’s prepared Registered Nurse and has been able to use her education and knowledge to advocate for her health, and shares her experiences to help others through her social media account. She volunteers her time sharing her health journey with high school students to raise awareness for organ and tissue donation, through an outreach program at her transplant hospital.
In 1975, at the age of ten years old, Gary Klausner was diagnosed with Cystic Fibrosis– a life threatening disease with an average life expectancy of 16 years old at the time. For the past 45 years, he has faced every challenge head on with his “Never Say Never” attitude and has been an inspirational and motivational force to all who have met him. At the age of 33, Gary left his six day old twin boys and wife to move to North Carolina to be waitlisted for a Double Lung Transplant at Duke University Hospital, not knowing if he would ever see them again. Since receiving his Double Lung Transplant in 1998 – Gary’s mission has been to spread the word about Organ Donation and Cystic Fibrosis. He has been featured on several television shows including: “Bravo TV Channel – Queer Eye for the Straight Guy”, The Discovery Health Channel – “Beating the Odds” and News 12 Long Island.
In addition, he has been honored by several organizations and companies including the Boomer Esiason Foundation and Genetech’s “Heroes of Hope” award for his courage and inspirational achievements.
In his profession, Gary is consistently recognized as a national top performer in medical sales winning multiple achievement awards.
Shahid is an author, Specialist Biomedical Scientist, HCPC Scientist, Chartered Scientist, an Academic Scientist, Writer, Presenter, Co-Founder and CEO, Lecturer, Supervisor, Researcher, Blogger and Healthcare Contributor. Shahid was Advancing Healthcare Awards (2018) Finalist. Shahid has been involved in the development of key practices through a number of working groups/ panels. He was a member for NHS Blood and Transplant (NHSBT) Paediatric Kidney Advisory Group (PKAG-sub-committee 2009-2011) and was a member of the British Association of Paediatric Nephrology (BAPN) (2011-2014). Shahid was involved in the development of the BAPN; Nephrology Networks Guide (2012) and was also a member of the Kidney Research Education Initiative (KREI) (2010-2013). Shahid has led and collaborated to inform renal health projects. Shahid has collaborated through multidisciplinary teams and formed a number of publications. His research continues to stimulate intrigue to those in renal and wider healthcare. Shahid has presented work locally, regionally, in various European countries and internationally. Shahid continues to look for paper and research collaborations in effort to widen understanding in areas relating to Long-Term Conditions (LTCs), clinical and scientific practices. He was diagnosed at 2-months of age with Congenital Renal Dysplasia. Shahid had his 4th renal transplant in 2007. Shahid teaches biomedical science on a sessional basis. Shahid enjoys Fitness Training, Roman-Greco Wrestling, and Strongman.
I went in to heart failure through a viral infection in December 2018/ January 2019. Previous to this, I had been completely well. Unfortunately, the infection took hold pretty quickly and my consultants believed I had Dilated Cardiomyopathy; my heart was severely scarred and unable to pump the blood around my body like it should. After months of tests and just six weeks on the urgent transplant list, I received my new heart in May 2019. The first year is the most critical and risk of infection and illnesses will always be high due to the need for immune suppressant medication. I am spending the first year getting my strength back by going to the gym, walking my dog and I have recently started yoga again. I also hope to attend and participate in the British Transplant Games this year.
Aside from this, I enjoy traveling, drawing, dancing and you will often find me with my friends and family, enjoying their company whenever I can. I have 5 wonderful siblings, and 4 nieces and nephews, so life is far from boring. I like to write, and hope to start a blog as soon as I can. I also help out at staff training events for doctors and nurses by publicly speaking about my journey. Public speaking does not come easily to me, but if I can, I would love to push myself to do more to help people in the transplant community. I am so happy and grateful to be alive and it is all because of a donor. Organ Donation saved my life and I hope to never take life for granted again.