Posts by admin

UPDATE: Dr. Elizabeth Neufield – November 2010

Update from the laboratory of Dr. Elizabeth Neufield – November 2010 For many years, we have focused on two questions: why is the brain so severely affected in patients with Sanfilippo syndrome, and how can we develop treatment for this disease, using our mouse model of Sanfilippo syndrome type B (MPS IIIB)? We believe that we are now close to an answer to both questions. The primary defect...

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Defying Limitations

Everyday,  I take the train into downtown Chicago and walk nearly a mile to get into my Michigan Avenue office.  Although some days I have to dodge the unruly cab driver, here or elbow my way through Union Station, the city’s beauty never ceases to amaze me. However, what amazed me more was the passion Kirby’s special ed teacher showed toward her students.  I don’t know if I...

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Fore Kirby

Fore Kirby

The Foundation is actively seeking new participants for The Seventeenth Annual “Fore Kirby” Golf Fun Raiser. Date: Friday,  June 1, 2012 Where: Ruffled Feathers Golf Club How will the proceeds from the Golf Fun Raiser be used? Your contribution will help us to fund researchers currently seeking funding from The Children’s Medical Research Foundation, Inc. to continue their...

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A Cure is Within Our Reach

From the early days when we found only one researcher in the world working on a cure for Sanfilippo, to today when we face an exceptional opportunity, our mission to find a cure has never been more defined.  Please join us in our mission to find a cure for Kirby and other afflicted children.  We chose to fight this disease.  Let’s take our biggest step together.   Donate what you can,...

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Kirby’s 20th Birthday

This past week we celebrated Kirby’s 20th birthday.   As the day approached,  I couldn’t help but have some bittersweet feelings.   I thought back to the story my parents tell about Kirby’s diagnosis, when the doctor told my parents, well, enjoy her while you have her.  On that day, none of us knew what to expect or how long Kirby would be with us.  After that day, we...

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