IFOPA Founding Member leaves a legacy

Learn how Shay Williams' love of his independence inspired a gift to the Harold & Elaine Kaplan Quality of L.I.F.E. Awards

Kish Castillo and Shay Williams

This article was written and submitted by Shay's life partner Kish Castillo and her friend Merilee Lawson.

IFOPA Founding Member Shay Williams and his mother, Susan "Sue" Williams, were strong advocates of the FOP community, and were committed to making a difference in the lives of those with FOP and their caregivers. Sue fought multiple battles to create equal access to those with disabilities. Shay grew up in an environment of awareness and activism, which he continued throughout his life, and which he shared with both his family and his FOP community.

As the mother of a son with FOP, Sue recognized the need for a community for all of the people whose lives were impacted by this condition. In addition to the work both of them did while they were still alive, Sue and Shay decided together to leave a gift to the IFOPA upon Shay’s passing. As Shay’s original caregiver, Sue worked hard to create a life that empowered Shay to live a full and independent life, in which he could make the difference he wanted to make in the world.

The gift to the IFOPA in support of the Harold & Elaine Kaplan Quality of L.I.F.E. Awards was simply the most recent act by Shay to support this community which meant so much to him. Given the rarity of the condition, so few people were in a position to truly understand what it meant to have someone who understood the unique challenges the condition presents. Having a space to connect and share was very meaningful to both of them.

For Shay and Sue, IFOPA was about connection for those who have the condition, and those who care for them. Being able to leave a gift to this organization and the Quality of L.I.F.E. Awards meant a tremendous amount to both of them, and I know they would encourage others to do so as they are able. 

The IFOPA is grateful for the generosity of Shay and Susan and our other Jeannie L. Peeper Heritage Roll of Honor donors. The IFOPA accepts a variety of legacy gifts, also known as planned or estate gifts. Would you like to learn more? Visit ifopa.org/roll_of_honor or contact Fundraising and Special Projects Manager Cathryn Roys at [email protected].


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