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CALSCALE:GREGORIAN
BEGIN:VEVENT
DTSTART:20230625T160000Z
DTEND:20230625T190000Z
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SUMMARY:TopGolf for The Sweetest Boy Benefit for The Cure Sanfilippo Foundation
DESCRIPTION:Please join us at the 1st annual Topgolf for the Sweetest Boy benefiting Cure Sanfilippo Foundation. Registration includes Topgolf and lunch. \n\nSanfilippo Syndrome is a rare terminal genetic disorder likened to Alzheimer's disease in children. Life expectancy is somewhere in the teens. There is currently no cure or treatment available for this terrible disorder. \n\nIn 2019\, our son Connor was diagnosed at age 2. It was one of the worst days of our lives. Pursuing clinical trials was our only option\, so his mother Bonnie traveled all over for our dear boy to be evaluated for gene therapy studies\, including Minnesota (twice)\, Columbus\, and Barcelona. Denied for each study\, our last option was a bone marrow transplant study at Duke University. After 7 months inpatient stay\, we were told the transplant failed\, and there was nothing more that could be done. We took Connor home where he was surrounded by loving family. On April 28\, 2021\, Connor left this world.\n\nPlease help make sure other families don't have to suffer losing their child. Please attend or consider donating.
X-ALT-DESC;FMTTYPE=text/html:<p><span style="font-size:24px"><span style="font-size:12px">Please join us at the 1st annual Topgolf for the Sweetest Boy benefiting Cure Sanfilippo Foundation. Registration includes Topgolf and lunch.</span>&nbsp\;<br />\n<span style="font-size:12px">Sanfilippo Syndrome is a rare terminal genetic disorder likened to Alzheimer&#39\;s disease in children. Life expectancy is somewhere in the teens. There is currently no cure or treatment available for this terrible disorder.&nbsp\;<br />\nIn 2019\, our son Connor was diagnosed at age 2. It was one of the worst days of our lives. Pursuing clinical trials was our only option\, so his mother Bonnie traveled all over for our dear boy to be evaluated for gene therapy studies\, including Minnesota (twice)\, Columbus\, and Barcelona. Denied for each study\, our last option was a bone marrow transplant study at Duke University. After 7 months inpatient stay\, we were told the transplant failed\, and there was nothing more that could be done. We took Connor home where he was surrounded by loving family. On April 28\, 2021\, Connor left this world.<br />\nPlease help make sure other families don&#39\;t have to suffer losing their child. Please attend or consider donating.</span></span></p>\n\n<p>&nbsp\;</p>\n
LOCATION:TopGolf 1010 Greenwood Blvd Lake Mary\, FL 32746
UID:e.2138.32668
SEQUENCE:3
DTSTAMP:20260530T104310Z
URL:https://business.seminolebusiness.org/events/details/topgolf-for-the-sweetest-boy-benefit-for-the-cure-sanfilippo-foundation-32668
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