I’m Louise, I work in the support and advocacy team at the MPS Society.
I will have worked for the MPS Society for five years this coming January. I support families affected by MPS III Sanfilippo Disease, LAL D, GMI Gangliosidosis, ML I (Sialidosis) and in the last two years ML II (I Cell). In that time I have attended two national conferences, one international conference, two visits to Lapland and one visit to Howlett’s Zoo.
Many families feel isolated and that they have very little to look forward to
The diseases we support are rare and progressive, and many families feel isolated and that they have very little to look forward to. The events allow families to make special memories they can cherish, but also allow them to physically meet families who, being in a similar position, can really identify with some of the struggles they have.
Meeting face to face equals a better connection and understanding to others within the rare disease community