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)

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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.

t-shirt-graphic

group-photo

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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