Family Gatherings

The Mid-West Cystinosis Family Celebrates 25th Yr. Anniversary

The weekend of July 18th- 20th, marked the 25th year our Mid-West Cystinosis Family has gathered for a weekend of sharing, eating, and enjoying time together. What started as a conversation in 1989 @ the NIH (National Institutes of Health) became a reality during the summer of 1990 at Big Lake State Park near Bigelow, MO. We have gotten together at numerous locations around the mid-west, rotating the host/hostess among the families—who then choose a location. This summer we gathered in Cedar Rapids, Iowa with one of the young adults with cystinosis, Andrew Hoffmann age 26, in charge of the weekend.

Andrew started by a preparing and setting up a taco bar for us @ the motel on Friday night. Saturday, he took us to the downtown Cedar Rapids Farmer’s Market where some purchased fresh produce, and handmade jewelry and soaps. Andrew planned a grill-out and picnic for Saturday lunch at a nearby park, Lake McBride. (see picture: Andrew and Don Wagner)


While Andrew played chef; some walked to the lake, others looked at photo albums and talked, and others ‘played bags’ in teams of 2. Saturday evening we attended a local baseball game, where a Minnesota Twins’ farm team, the Cedar Rapids Kernels beat out the Fort Wayne Tincaps. GO Kernels!!

Our weekend was completed with individual family pictures, and a whole group picture with our lime green t-shirts (donor awareness color). The t-shirts were designed by David Reuter, who has cystinosis and is completing an Art Degree; and are dedicated to 25 years of ‘family gatherings’ and memories of ‘family members’ who are no longer with us. The front logo is repeated on the back.



Included in the group picture: back row, left to right: Ryan Farnsworth, Blake & Khristy Rollinger, Allie Norris, Jon Hoffmann, Amy Rollinger, Sarah Rich, Joan Hohl, Doretta & Don Hoffmann, Kasey & Lonnie Hohl, Holly Reuter, Candy & Don Wagner.
Front row left to right: Bill Croce, Sarah Farnsworth, Andrew Hoffmann, David & Shawn Reuter, and Nick Wagner.


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