March 2024
by Katherine O’Hagan, Team Gleason, Director of Development

This is a day that I’ll hold close to my heart, and one that so clearly reaffirms my “why” in leading development for Team Gleason Foundation.

These photos below are from the Rupesh Kotiya Legacy Celebration on March 2, 2024, in Plano, Texas, with Siobhan Pandya and Ronan and Keaton Kotiya – an inspirational family channeling the grief of losing their incredible father/husband to ALS by growing his legacy to help others.

Team Gleason’s Katherine O’Hagan poses with Siobhan, Ronan and Keaton Kotiya

Team Gleason’s Katherine O’Hagan poses with Ronan Kotiya

I want to thank Keaton, Ronan, and Siobhan for inviting Team Gleason to participate in this special day and, more importantly, for teaching me, through their actions, the very heart of our mission. Rupesh lived fully every day until his last, and his family continues to push forward with the same zest for life. 

As part of Rupesh’s Legacy Celebration, Ronan and Keaton released two special projects and I am eager to share them with you: 

Ronan Kotiya – age 13, created a 9-episode professionally made podcast (now available on Apple, Spotify, and YouTube) called Mindset Matters – which creates a roadmap for young people faced with the challenge of an ALS diagnosis in their family.

From interviews with his child therapist, his family, and his father’s medical team, including Dr. Lee -a pulmonologist from UT Southwestern, as well as other leading voices such as our partner NuMotion, Ronan provides important tools for young people navigating an ALS diagnosis.

Keaton Kotiya, age 11 – a foodie just like his dad, created a cookbook called Live, Laugh and Cook with Keaton Kotiya, which catalogs his father’s favorite recipes from before his diagnosis through the progression of his disease. To purchase your own copy of Keaton’s cookbook, click here.

Credit: AP
Keaton Kotiya kisses his father Rupesh after he helped prepare him for bed.

Team Gleason Founder, Steve Gleason, shared a special video message with the family as part of the Rupesh Kotiya Legacy Celebration, which included the statement, “I may not be able to do things the same way I did before ALS, but life, communication, exploration and introspection are all still possible.  It hasn’t been easy, but it sure has been a meaningful journey thanks to innovative solutions and a lot of help from my family, friends and care team.”Rupesh’s diagnosis was not easy for him or his family, but with the right mindset and support system, they push forward. As Siobhan shared, she and her sons choose to live in the present moment and support those in our village who need help today.  

Team Gleason is proud to partner with the Kotiya family as a benefactor of this meaningful work. Siobhan and her sons are incredibly special people, and their vision is fully aligned with ours: a world where people living with ALS have the resources and the opportunities to not only continue living, but continue living productive, purposeful, and meaningful lives. 

We full heartedly agree with Ronan’s call to action towards the end of his first podcast episode: “Be optimistic, proactive, resilient, courageous, hopeful and loving…celebrate the lives of those we love.” 

Many, many thanks to the Kotiya family, our pALS and cALs, my colleagues, our partners, and every member of our village across the country that continues to invest in our mission. Together, we are stronger.  

No White Flags!

Rupesh, Siobhan, Ronan and Keaton Kotiya | Source

Rupesh, Ronan and Keaton Kotiya | Source

You can keep up with Siobhan Pandya and Keaton and Ronan Kotiya by following Siobhan on LinkedIn and Instagram @Siobhan_Pandya.