Posts by admin

Purple Lemonade Stand

Purple Lemonade Stand

Along with other family foundations involved in raising funds toward the cure for Sanfilippo Syndrome, stuff we have been invited to participate in a national effort called Purple Lemonade – A Stand for Sanfilippo Syndrome. It was the vision of Grey Chapin, a six-year-old determined to fund a cure for the disorder that afflicts her older sister Blair. Please take a moment to read further to...

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Webinar: October 8

Webinar: October 8

Nationwide will be hosting a webinar October 8th from 2:00 – 3:30 EST to further explain the MPS IIIA/IIIB Natural History Study, including the rationale, aims, and plans for enrollment. This will be a 90-minute webinar with 45 minutes of slides/presentations followed by 45 minutes of questions. Further details to follow, including call-in information. Space is limited to 250 attendees. Learn...

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Sweetheart Dance

Sweetheart Dance

An elegant setting at on of the world’s finest hotels The 20th Annual Sweetheart Dinner Dance will be held Friday, February 13, 2015,  in the Grand Ballroom of the Four Seasons Hotel Chicago. This gracious venue is set high above the Magnificent Mile, where guests will be welcomed with a champagne cocktail reception followed by a four-course dinner in contemporary American style enhanced by...

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Trivia Night

Trivia Night

Pencil us in on your calendars for Friday, pills November 15th.  It is the date of our 3rd Annual Trivia night at the Hinsdale Community House.  You can be sure of a night filled with trivia, friends and good times.  Reservations are $25.00 per person. For more information, call 708-784-0631 or send an email to curekirby@sbcglobal.net. Register...

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Kirby’s High School Graduation

From a very early age, Kirby impressed us.  She’s always brought joy to the toughest situations and inspired us as she overcomes limitations.  This June, family and friends came together to watch Kirby reach an incredible goal:  cruise across the stage to accept her high school diploma. Once we started celebrating her achievement, Kirby’s long-time friends, Kathi and Rich (Nick...

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