Introducing Mass General Research Institute

Facebook giveaway 1

Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research Institute. What better way to celebrate than a giveaway! With a few clicks or taps, you can be entered to win some really sweet swag from the good folks at Massachusetts General Hospital. You have a chance to win an Official MGH Men or Woman’s zip-front fleece jacket, MGH Ball Cap, or an official grey scarf embroidered with our SSRA logo. There will be several winners so why not enter? The contest details are below. Mass General is the #1 Hospital on the East Coast and named #2 in America by U.S. News and World Report. They are the only hospital in America to be recognized across all 16 specialties assessed by U.S. News. Let’s talk about Dr. Levys’ new facilities for a

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Believe in Hope 2019 Benefit

Believe in Hope Dinner

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. 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

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The Decade that Was

End of a decade

The eve of a new year is a time for reflection. When I look back on our lives at the end of 2009 I’m reminded of how carefree we felt. A long wished for grandbaby joined our lives, dreams we would hike the Grand Canyon from rim to rim together, crawfish boils, Halloween parties, vacation trips, outdoor adventures camping, and hiking. Life was a nonstop activity. 2019 find us saying goodbye to the decade that was. A decade that began filled with promise is ending with changes so profound, if someone had given me a peek into the future, I would have never believed. It’s ironic this new decade begins with 2020. Our road ahead may be bumpy but we are determined to tackle this new year with 20-20 vision. 2019 is ending with so many new possibilities I am feeling hopeful once again. The vision for Living with Superficial

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A Tough Decision

SSRA Guest Post

I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some involuntary movement.

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