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
Families are often aware that other families exist, but for some, meeting face to face, equals a better connection and understanding to others within the rare disease community. There are a number of families that become lifelong friends and support for one another as a result of our conferences and social events.
Face-to-face contact helps to build rapport, hopefully making it easier for families to approach us for any support they may require
Additionally, for me, meeting families in person has supported my learning about these conditions and my understanding about the challenges families face. This face-to-face contact helps to build rapport, hopefully making it easier for families to approach us for any support they may require now and in the future.
When COVID-19 came along, we had to cancel all our family events in 2020. Now, we are trying raise £15,000 to fund some fun and exciting 2021 family events so we can all meet up again.
All you need to do is make a donation between 12 midday on Tuesday 1 December and 12 midday on Tuesday 8 December. During this time, donations will be matched pound-for-pound at no extra cost to you and it means your donation will be worth twice as much to us and the families we support.
Just visit www.mpssociety.org.uk/christmas between those dates to donate online.