Events

A Night of Hopes and Wishes Honoring Jake Krahe
Saturday, May 20, 2017

We hope you will join us on Saturday, May 20, 2017 for “A Night of Hopes & Wishes” at the Weymouth Country Club in Medina, Ohio. The event begins with cocktails at 6:00 p.m followed by dinner at 7:00 p. m. The evening includes delicious food, refreshments, unique silent and…

Annual Lots of Love for Landon Halloween Event

The Hartz family is happy to announce the 6th Annual Lots of Love for Landon Halloween Fundraiser held in honor of their son Landon, has generated more than $11,300 to help fund cystinosis research. The festive party-goers enjoyed tricks and treats, great music, the annual costume contest, and special door…

Hearts for Hadley

 New Year’s Celebration In Honor of Hadley Alexander The Hearts for Hadley New Year’s Eve Celebration welcomed in 2016 with fun, food and the legendary garage band Doon!  The festive evening, held in honor of Hadley Alexander, included heavy appetizers, beer and wine and raised more than $3,150 which will help fund…

Mulligans Fore Morgan

Morgan Peachman, daughter of Jamie and Jennifer Peachman of Avon Lake, OH, was diagnosed with cystinosis at 23 months of age, after a 14 month struggle to find a diagnosis. Morgan is now 8 years old and in the third grade at Redwood Elementary School. She loves dancing, singing, cheer-leading,…

Mount Kilimanjaro Climb to Raise Money for the Cystinosis Research Foundation

Mount Kilimanjaro Climb by RuthAnn Ahnen in honor of her daughter Katie Ahnen RuthAnn Ahnen began her journey on December 30, 2014 to climb Mount Kilimanjaro to raise money for the Cystinosis Research Foundation in honor of her daughter Katie and the cystinosis community. (Pictured are Katie and her friend…

Chance For Chase

Chase was diagnosed with cystinosis at 20 months of age on October 15, 2013. Cystinosis is a rare, incurable metabolic disease in which the amino acid cystine accumulates within tissues. This build up eventually destroys all the body’s organs including the kidneys, liver, muscles, white blood cells, eyes and central…