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10th Annual Super Lee Golf Tournament Fundraiser for the Timothy Syndrome Foundation
Ten years ago, in November 2015, Lee Ciciarelli—lovingly known as “Super Lee”—lost his fight to a rare genetic condition called Timothy Syndrome at only 5½ years old. He left behind his parents, Mary Ann and Christian, and his one-year-old sister, Evelyn Ann.
Shortly before Lee’s passing, his mother, Mary Ann, co-founded the Timothy Syndrome Foundation (TSF) along with Katherine Timothy (for whom the condition is named) and another TS mother, Courtney Waller. This organization supports families who have a child with this extremely rare condition that affects the CACNA1C channel throughout the body. Timothy Syndrome impacts the heart, brain, and other organ systems, often causing life-threatening arrhythmias, hypoglycemia, developmental delays, and a host of other serious medical complications. Fewer than 100 cases have ever been identified worldwide, making community and research support critically important.
Shortly before Lee’s passing, his mother, Mary Ann, co-founded the Timothy Syndrome Foundation (TSF) along with Katherine Timothy (for whom the condition is named) and another TS mother, Courtney Waller. This organization supports families who have a child with this extremely rare condition that affects the CACNA1C channel throughout the body. Timothy Syndrome impacts the heart, brain, and other organ systems, often causing life-threatening arrhythmias, hypoglycemia, developmental delays, and a host of other serious medical complications. Fewer than 100 cases have ever been identified worldwide, making community and research support critically important.
Family friend Mike Harrington knew he wanted to do something to honor Lee’s life after his passing in 2015. In the fall of 2016, he started the first Super Lee Golf Tournament to raise money for TSF.
This year marks the 10th anniversary of Super Lee’s passing as well as the 10th Annual Super Lee Golf Tournament. Our goal is to raise over $50,000 in honor of the “forever five-year-old” Super Lee. This tournament is the largest fundraiser for TSF each year. The money raised directly supports the Timothy Syndrome Foundation’s annual Family Conference, which brings together affected families, researchers, and clinicians. The conference features expert panels, presentations, and discussions on the latest advancements in research and treatment. Funds from the golf tournament ensure this vital event continues, fostering connection, hope, and progress for families living with Timothy Syndrome.
We’re incredibly grateful to all the companies, friends, colleagues, and volunteers who’ve donated and supported this yearly event, raising $172,000 YTD. This year our goal is to make it 9 straight years of donations surpassing the previous year and raising $50,000.
To learn more about Timothy Syndrome and TSF watch this video.
This year marks the 10th anniversary of Super Lee’s passing as well as the 10th Annual Super Lee Golf Tournament. Our goal is to raise over $50,000 in honor of the “forever five-year-old” Super Lee. This tournament is the largest fundraiser for TSF each year. The money raised directly supports the Timothy Syndrome Foundation’s annual Family Conference, which brings together affected families, researchers, and clinicians. The conference features expert panels, presentations, and discussions on the latest advancements in research and treatment. Funds from the golf tournament ensure this vital event continues, fostering connection, hope, and progress for families living with Timothy Syndrome.
We’re incredibly grateful to all the companies, friends, colleagues, and volunteers who’ve donated and supported this yearly event, raising $172,000 YTD. This year our goal is to make it 9 straight years of donations surpassing the previous year and raising $50,000.
To learn more about Timothy Syndrome and TSF watch this video.
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10th Annual Super Lee Golf Tournament Fundraiser for the Timothy Syndrome Foundation
10th Annual Super Lee Golf Tournament Fundraiser for the Timothy Syndrome Foundation
Ten years ago, in November 2015, Lee Ciciarelli—lovingly known as “Super Lee”—lost his fight to a rare genetic condition called Timothy Syndrome at only 5½ years old. He left behind his parents, Mary Ann and Christian, and his one-year-old sister, Evelyn Ann.
Shortly before Lee’s passing, his mother, Mary Ann, co-founded the Timothy Syndrome Foundation (TSF) along with Katherine Timothy (for whom the condition is named) and another TS mother, Courtney Waller. This organization supports families who have a child with this extremely rare condition that affects the CACNA1C channel throughout the body. Timothy Syndrome impacts the heart, brain, and other organ systems, often causing life-threatening arrhythmias, hypoglycemia, developmental delays, and a host of other serious medical complications. Fewer than 100 cases have ever been identified worldwide, making community and research support critically important.
Shortly before Lee’s passing, his mother, Mary Ann, co-founded the Timothy Syndrome Foundation (TSF) along with Katherine Timothy (for whom the condition is named) and another TS mother, Courtney Waller. This organization supports families who have a child with this extremely rare condition that affects the CACNA1C channel throughout the body. Timothy Syndrome impacts the heart, brain, and other organ systems, often causing life-threatening arrhythmias, hypoglycemia, developmental delays, and a host of other serious medical complications. Fewer than 100 cases have ever been identified worldwide, making community and research support critically important.
Family friend Mike Harrington knew he wanted to do something to honor Lee’s life after his passing in 2015. In the fall of 2016, he started the first Super Lee Golf Tournament to raise money for TSF.
This year marks the 10th anniversary of Super Lee’s passing as well as the 10th Annual Super Lee Golf Tournament. Our goal is to raise over $50,000 in honor of the “forever five-year-old” Super Lee. This tournament is the largest fundraiser for TSF each year. The money raised directly supports the Timothy Syndrome Foundation’s annual Family Conference, which brings together affected families, researchers, and clinicians. The conference features expert panels, presentations, and discussions on the latest advancements in research and treatment. Funds from the golf tournament ensure this vital event continues, fostering connection, hope, and progress for families living with Timothy Syndrome.
We’re incredibly grateful to all the companies, friends, colleagues, and volunteers who’ve donated and supported this yearly event, raising $172,000 YTD. This year our goal is to make it 9 straight years of donations surpassing the previous year and raising $50,000.
To learn more about Timothy Syndrome and TSF watch this video.
This year marks the 10th anniversary of Super Lee’s passing as well as the 10th Annual Super Lee Golf Tournament. Our goal is to raise over $50,000 in honor of the “forever five-year-old” Super Lee. This tournament is the largest fundraiser for TSF each year. The money raised directly supports the Timothy Syndrome Foundation’s annual Family Conference, which brings together affected families, researchers, and clinicians. The conference features expert panels, presentations, and discussions on the latest advancements in research and treatment. Funds from the golf tournament ensure this vital event continues, fostering connection, hope, and progress for families living with Timothy Syndrome.
We’re incredibly grateful to all the companies, friends, colleagues, and volunteers who’ve donated and supported this yearly event, raising $172,000 YTD. This year our goal is to make it 9 straight years of donations surpassing the previous year and raising $50,000.
To learn more about Timothy Syndrome and TSF watch this video.
