SSRA

Believe in Hope 2019 Benefit

We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019, at the Ingleside Hotel in Pewaukee, Wisconsin. Our first Superficial Siderosis Research Alliance benefit dinner was indeed a fantastic evening. Racing against a very short deadline, SSRA event coordinator Sue Dempsey, SSRA President Kyle Dempsey, and our volunteers showed what the SSRA is capable of when a motivated group works together. Ticket sales were almost double original estimates requiring a venue change and room size upgrade to accommodate this wonderful group of people.

welcome

Be sure to visit our benefit dinner photo gallery.

The evening began with a guitar duo provided by SSRA treasurer Lloyd Gleisner and Jeff Nesheim during the pre-dinner meet and greet. Guests enjoyed cocktails as the silent auction bidding opened. Every auction item was successfully bid on before the night ended, and one lucky live bidder went home with a pair of Green Bay Packer tickets.

Our program began with the introduction of SSRA President Kyle Dempsey by Master of Ceremonies Randy Kohler. Kyle shared his heartfelt message about the catalyst for founding the Superficial Siderosis Research Alliance and the vision He and his wife Sue have going forward. Guests were shown a short Friedreich ataxia video highlighting the achievements of fellow rare disease group FARA and the impact of long-term supporters..

believe in hope 2019 benefit

Every evening must have its hiccups, and ours was no exception. Due to an unavoidable delay, our guest speaker, Dr. Michael Levy, missed his flight and was unable to attend in person. However, thanks to technology, he was still able to deliver his presentation. The night ended with a message from SSRA Board Member Randy Kohler announcing the roll-out of the SSRA Champion Supporter Pledge program.

We are so thankful to our guests, supporters, and planning committee for making this event such a great night for our alliance. If you missed our inaugural 2019 benefit, no worries, planning has already begun for our next benefit evening in 2020.

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Rori Daniel

Living With Superficial Siderosis began in 2014 as a personal blog to keep friends and family informed after my husband, Gary, was diagnosed with superficial siderosis. Over time, it evolved into a trusted resource for patients and caregivers navigating this rare condition. In 2019, Livingwithss.com joined forces with the Superficial Siderosis Research Alliance (SSRA), and together we’ve grown into a global voice for research, advocacy, and education. Through shared stories and expert insight, we continue to raise awareness and push for progress—one patient, one breakthrough at a time.

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