The TSC Alliance and Endowment Fund Board of Directors recently established the Ken Johnson Memorial Fund to honor and pay tribute to Ken Johnson – a grandparent, organizational leader, compassionate volunteer and inspiration to the TSC community.  Ken passed away January 27, 2021 at the amazing age of 90.

Ken and his wife Shonnie were first inspired into action by his daughter-in-law, Emily, who served as the Northern California Representative, beginning after her daughter Annie’s diagnosis 1984, and over the next dozen years.  They witnessed how Emily literally spent so much of her time providing support for newly diagnosed families, raising money, organizing local medical conferences – and they wanted to do something actively to help.

Ken and his family leave a legacy of three decades of volunteer and board leadership.  He is survived by his devoted wife of more than 70 years, Shonnie Johnson (who served as TSC Alliance Board Chair); their son Scott (who served as TSC Alliance Board Chair) and Scott’s wife Emily (Northern California Representative) along with Scott and Emily’s daughters, Annie and Megan (who served on the Board of Directors); their son Phil Johnson; and their daughter Jill Banks.  Ken is lovingly remembered by fellow board alumni who served with him, by the members of the TSC community who were impacted by his guidance and support and by the TSC Alliance staff team who were fortunate to be mentored by Ken.

During his tenure as a volunteer, community leader and board member at the TSC Alliance, Ken worked to ensure the long-term stability of the organization, the dissemination of information to individuals and families to help make informed decisions and expansion of research to help improve the quality of life for those challenged by TSC.  Among his accomplishments:

  • Founding member of the TSC Alliance Endowment Fund and being one of its early supporters through a gift annuity;
  • Participating in first Clinical Consensus Conference to set gold standards in the diagnosis, testing and treatment of TSC;
  • Supporting and participating in several Regional, National and World TSC Conferences, often serving as a moderator and host for fellow grandparents;
  • Serving on the search committee for TSC Alliance CEOs and lending his business acumen to processes and infrastructure development; and
  • Supporting TSC research initiatives.
To honor Ken, the TSC Alliance and our Board of Directors introduced several initiatives to bolster his vision for the organization, support services and research, including:
  • The Ken Johnson Memorial Fund within the TSC Alliance Endowment Fund to support research benefiting adults living with TSC, including TSC-Associated Neuropsychiatric Disorders, refractory epilepsy and prevention of tumor growth.  In addition and in Ken’s memory, the Endowment Fund will help provide scholarships to the World TSC Conference on a regular basis over and beyond its annual gifts to provide individuals and families the opportunity to attend who may not be able to otherwise.
  • Named scholarships for the 2022 World TSC Conference in Ken’s memory: the Ken Johnson Scholarship for Individuals and Families to the World TSC Conference.
  • Feature article in the Fall 2021 issue of Perspective magazine.

“What a privilege it was for me to have known him. We met in Dallas at our first TSC meeting two months after Robin was diagnosed in 1997. He was my friend and mentor from that day on. When I was Chairman, I don’t know how many times he helped me. He cared. He helped make dealing with TSC easier. His smile. His sense of humor. He will be missed by many.”  Marion Adams, Chair, TSC Alliance Endowment Fund

“Ken will be greatly missed by the TSC community. He was a continual source of inspiration for all and a compassionate advocate for his granddaughter Annie. I met Ken many years ago, and he was always welcoming, supportive, and kind at conferences and meetings.”  Peter Crino, MD, PhD, Chair, TSC Alliance

Contributions to the Ken Johnson Memorial Fund can be made at:  www.tscalliance.org/KenJohnsonMemorial.