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In Tribute: Celebrating the Legacy of Lynne Ann Courtemanche Shapiro, Co-Founder of the Children’s Tumor Foundation

It is with heavy hearts that we share the news of Lynne Ann Courtemanche Shapiro’s passing. Lynne was one of the original co-founders of the Children’s Tumor Foundation in 1978 (known then as the National Neurofibromatosis Foundation). Our heartfelt condolences go out to her family, loved ones, colleagues, and friends as we remember Lynne and the impact she made. Through her pioneering efforts, Lynne elevated NF awareness and support, leaving a timeless contribution that to this day inspires researchers, medical professionals, patients, families, volunteers, and countless others within and beyond the NF community.

Lynne embarked on her extraordinary mission at a time when pervasive uncertainty and misunderstanding clouded the landscape for those affected by NF. In the face of her own diagnosis, she refused to succumb to despair. Instead, she turned adversity into advocacy, sparking a beacon of hope where none seemed to exist.

The genesis of the National Neurofibromatosis Foundation – now known as the Children’s Tumor Foundation— is a testament to her perseverance. It sprang forth from a simple yet profound question: “Is there a group dedicated to people like me?” Undeterred by the absence of such a lifeline, she resolved to create it herself. Alongside her trusted physician Allan Rubenstein and the dedicated attorney Joel Hirschtritt, she forged the Foundation’s humble beginnings, laying the cornerstone for what would become a bastion of knowledge, empowerment, and community.

From its inception, the Foundation nurtured the seeds of awareness and understanding, cultivating a landscape where knowledge has flourished, the effects of which are still felt today. Over 45+ years, CTF’s unwavering commitment to advancing research and championing the cause of NF has borne fruit, yielding groundbreaking discoveries, life-changing treatments, and a stronghold of hope for those navigating the complexities of NF.

Today, as we reflect on Lynne’s legacy, we honor her remarkable contributions. Her enduring influence lives on through the countless lives touched by the Foundation, the dreams inspired, and the unwavering determination to find cures for NF. This commitment is evident in the Foundation’s mission to drive research, expand knowledge, and advance care for the NF community. 

We honor Lynne by continuing to support one another, advocating for research and awareness, and striving to make a positive difference in the lives of all those affected by NF.

You can read more about Lynne Ann Courtemanche Shapiro here.