October Note from the President & CEO
On Thursday, October 3 the TSC Alliance celebrated our 45th Anniversary Gala at the Edison Ballroom in New York City. This magical evening brought together more than 500 people, including families and individuals affected by tuberous sclerosis complex (TSC) from across the country, past and present board members, leading TSC researchers and clinicians, many of our corporate partners and representatives from other patient advocacy nonprofits with whom we frequently collaborate to move research and community programs forward. Together with the overwhelming support of the TSC community and those in attendance we raised $1 million to support TSC research and support for those affected. It was far and away the most successful event in our history. My deepest thanks to our Presenting Sponsors The Engles Family and Drs. Bonnie and Jonathan Rothberg and Family, and the 66 other sponsors whose generous support helped make the evening a success. You can view photos from the event at 45gala.shutterfly.com.
I’m also appreciative of our celebrity champions. Thank you Mo Collins, Jim O’Heir, Alex Skuby and Kat Perkins for continuing to volunteer your voices and considerable talent to our cause. You were with us to celebrate our 40th anniversary and in the five short years since there have been some amazing breakthroughs in no small part because of the hope and awareness you inspire. Special thanks also to Horizon Pharmaceuticals and Sing Me a Story for partnering with us to honor John Fitzmaurice and his family by working with John to compose an original song that Kat Perkins performed for the first time that night. This moving performance was a fitting tribute to a truly incredible family.
Throughout the evening we celebrated our past through the stories of those who helped shape it. I’m so grateful to Susan McBrine, Jennifer Waldron, Celia Mastbaum, Tom and Peggy and Lindsey, and Rhiannon Schade for eloquently sharing your stories and demonstrating how far we’ve come because of people like you. Through your tenacity we have achieved so much in the last 45 years and with the continued support of people like you we will achieve so much more together. If you haven’t already done so, I encourage you to watch their videos on our Facebook page.
We also had the distinct pleasure of honoring both Dr. Elizabeth Thiele and Greenwich Biosciences with our TSC Champion Award and honoring the Engles family with our Courage in Leadership Award. Thank you all for greatly advancing TSC research, increasing our knowledge of the disease and paving the way for new treatments. We are indebted to you for your commitment to and compassion for the TSC community.
This incredibly inspiring evening was the product of a year of planning by both the staff and the planning committee who spent countless hours making sure that every detail was thought of to ensure the event went off flawlessly. This is no small feat and I’m so humbled by and proud of everyone who worked so diligently to make this event such a tremendous success. I want to especially thank David and Jeannine Fitzmaurice for co-chairing the Gala and to April Cooper, Director of Community Programs for leading this effort from the staff team.
In many ways this event wasn’t just a celebration of where we’ve been, but also a look to the future and where we hope to go in the next few years. During my remarks I said that our moonshot is to make TSC a well-controlled chronic disease diagnosed at birth and successfully managed with personalized treatments for everyone affected. Now more than ever I believe that future to be well within reach, and when we get there we will look back at this night as a turning point in making that vision a reality.