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PTLD Champions

Thank you PTLD Champions for contributing your remarkable stories. We firmly believe that the most promising path to finding new therapies comes when those affected by a serious unmet medical need lend their voices to the process. Our company was named and founded for Atara Ciechanover, who, unfortunately, passed away after her battle with ovarian cancer. Taking inspiration from her experience, our mission has been to transform the lives of patients with serious diseases. We can only accomplish this mission by connecting with champions like you to better understand your journeys.

PTLD is like 90% of rare diseases; there is no FDA approved therapy for treatment. The only way to understand the impact of this “orphan” disease is to hear from the experts like you about how PTLD affects your lives. We are grateful that you lent your expertise to help others understand the arduous journey for someone who has already faced a life-threatening condition requiring a transplant then has to fight PTLD. Your willingness to share your story will serve to help others understand the patient journey and the unmet medical need for new innovative PTLD treatments. We are also acutely aware that many patients are not able to overcome PTLD. Your willingness to participate in this project honors their memory and provides hope to current and future PTLD patients.

We are so grateful that you graciously opened your lives and your homes to us. Your stories inspire us at Atara to work even harder to develop novel T-cell immunotherapies for patients living with cancer, autoimmune and viral diseases. They also fuel our sense of urgency because patients can’t wait.

With sincere appreciation for inspiring us and for being our partners in fulfilling our mission.

– Your Atarian Family

Doug

Doug

I learned how to cultivate wonder about life’s simple moments because I didn’t know how many moments I had left.

Doug spent much of his early life preparing to play a major role in his family’s business. He attended prep school, became a star lacrosse player, but longed for his own path. He embarked on a journey of self-discovery following school, until suddenly, at 29, doctors discovered he had Stage IV peripheral T-cell lymphoma. Since then, Doug has overcome chemotherapy, a double cord blood transplant, and life-threatening PTLD.

As a young man Doug began a practice of mindfulness which served him well throughout his medical challenges. It helped him not only survive two bouts of severe cancer, but also the life transition of losing his father. He crafted the practice into a career path, and now teaches mindfulness to high school students and serves as the lacrosse coach for his alma mater.

View Doug's story
Ayden

Ayden

Don’t give up. That’s the main thing.

Ayden came into the world as a big, healthy baby. But after his first birthday, he developed a pneumococcal strep infection which led to irreparable damage kidney disease. His weight plummeted from the 75th percentile to the 4th percentile. He went on dialysis and had to wait three agonizing years before receiving a kidney transplant. Ten years after his transplant, Ayden felt a lump in his belly and was diagnosed with PTLD.

Ayden strives to remain healthy, cancer-free, and in charge of his life. As a teenager, he works hard to stay caught up in school and pursue his passion in the martial arts. His dedication to his own health and well-being is based on his well-developed perseverance and fortitude.

View Ayden's story
Jessica Jessica PTLD champion 1982-2019

Jessica

I have always been very aware of the preciousness of life and that it is something we cannot take for granted.

Jessica was an active teenager as captain of her high school tennis team, and an actress in school musicals. Her life took an irreversible turn at the age of 16, when she suddenly had a massive heart attack.She experienced a leg amputation, heart transplant, endometrial cancer, and PTLD twice.

Jessica was a brilliant public speaker, told her incredible story and spread the word about PTLD. She sought to educate and empower caregivers and patients, particularly in the field of women’s health. It was with profound sadness that Jessica passed away in September 2019 while waiting to receive a heart and kidney transplant.

View Jessica's story
Ola

Ola

I am who I am because of my disability. People read my story and say, ‘You are a role model to me.’ Hearing that from others is what drives me forward.

When she was a toddler, Ola was plagued with constant fatigue. Her parents kept her in a stroller because she was so tired. At annual checkups, doctors couldn’t find what was wrong. She was finally diagnosed with hypertrophic cardiomyopathy and mitochondrial disease which necessitated a heart transplant and, five hours later, a kidney transplant. Several years after her transplants, she developed PTLD and was treated with surgery and medication.

These days, Ola counts her blessings. She is healthy but requires a wheelchair for mobility. She believes her disability has altered the course of her life for the better because it led her to her career in social justice. She has fought for the expansion of healthcare coverage, women’s rights, and access to high-quality education, often on stage with prominent politicians. Her fearlessness is best summed up with the inscription on her backpack: “I can do anything.”

View Ola's story