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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

Ayden Kidney transplant, PTLD Advocate

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
Mitch MS Advocate

Mitch

When somebody calls and says I’ve affected their life in a positive way—there’s not much better feeling than that. Especially knowing what people go through with this disease.
View Mitch's story
Dan MS Advocate

Dan

You have two options after you get a diagnosis: You can deny it or live it. I am choosing to live it. I am living the best I can with this disease.
View Dan's story
Ola Heart and kidney transplant, PTLD Advocate

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
Swapna Small intestine transplant, PTLD Advocate

Swapna

I have found my passion in speaking and creating a larger platform—to use the experiences I have gone through to improve healthcare for all stakeholders.
View Swapna's story
Allison Double lung transplant, PTLD Advocate

Allison

With my new lungs, I could walk up a flight of stairs without wheezing. I could breathe.
View Allison's story