Reflections on the 1st International Conference on Glycoprotein Storage Diseases

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.

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

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

3. How Could I Not Attend?
   Bill Skojec
   Sialidosis Parent

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

5.  A Home At Last!
   Brenda Haggett
   Mucolipidosis III Parent