FSIG’s 7th Annual Fun Run & Walk will be VIRTUAL this year to help support our Fabry community during these unprecedented times.
We’re living in challenging and uncertain times and that’s why we’re asking you to run or walk for a great cause. Help us raise money for the Fabry community! You can choose to run a virtual 5k or do a fun one mile walk. Get a free t-shirt with every entry. Your registration fee will help support our RAFT program. For more information and to register for this important event, please follow the link below.
Our Goal: $20,000
Location: Anywhere safe!
5k or 1 Mile: You can choose either or anything in between! Just make sure to take a photo of you completing your goal and tag us on Facebook at Fabry Support & Information Group using the hashtag #RunningforFabry. If you want, you can also take photos or videos of your activity and send it to our office email at firstname.lastname@example.org.
Saturday, May 22nd
On Saturday, May 22 at 1:00 PM (EST), we will conclude with a virtual patient meeting that will celebrate all of our participants and hear from a special speaker. We will also be giving updates on our fundraising goal!
If running or walking is not your thing but you want to attend the virtual patient meeting, please email us at email@example.com and we will send you the link information.
Our special speaker will be Andrew Johnston who is a member of the Fabry community. Andrew was diagnosed with Fabry’s disease when he was 29 years old. That diagnosis made sense of some of the symptoms he had growing up (pain in his hands and feet and reduced ability to sweat). He is currently on Enzyme Replacement Therapy and monitors key aspects of his health with regular doctors visits and tests. He leads a very active lifestyle (often exercising five to eight hours per week) and is often found on his bike. His longest ride was a 150mi ride (One Day Ride Across Michigan) and has completed a Half Ironman (1.2mi swim, 56mi bike, 13.1mi run). He is married to his wife of 17 years, Susanna, and has twin 13 year old boys, Nathan and Noah. The family enjoys many adventures by bike and spent a three day vacation in 2019 bike-packing in northern Michigan. He is busy at work leading teams that develop software and in his church as the Treasurer. His outlook on Fabry is to do all you can and leave the results to God.