Personal Reflections

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Personal Reflections

Family Conference


The International Conference in April 2004 was the first time ever that such a diverse group of families impacted by some of the rarest Lysosomal Storage Diseases had ever met others whose lives were similarly affected. For many, if not most, this was a profound experience. ISMRD solicited personal reflections from several parents to demonstrate how their lives had changed by attending this conference.

The Longest Journey Begins With the First Step
by Jenny Noble
Mucolipidosis III Parent

A Piece of Bad News…and A Piece of Good Luck!
by Sonja Woolley
Alpha-Mannosidosis Parent

How Could I Not Attend?
Bill Skojec
Sialidosis Parent

To Go or Not to Go…to Wait or to Do?
Anne Grégoriadès
Beta-Mannosidosis Parent

A Home At Last!
Brenda Haggett
Mucolipidosis III Parent