My next raising awareness campaign for Phelan-McDermid syndrome is going to be a big one. I've set myself a challenge which I'm hoping will raise maximum awareness of the syndrome. So here it is:
The Phelan Lucky campaign ended recently and it did amazingly well, selling 2728 items and raising wonderful funds for the PMSF. Once my Phelan Lucky tshirt arrives from the US my plan is to wear my shirt for one whole year, all day everyday, every event, any occasion, 365 days!!! I plan to document the campaign with a photo everyday and a flipagram at the end of the year to present it. I will wash it as I don't want to be Phelan Whiffy, but it will be a quick turn around so I can get it back on ASAP. I plan to get sponsored to do this, raising funds for PMSF UK. I'm aiming high with my target at £2,213. I've chosen this number as it symbolises where the deletion is and th chromosome. I want to get as much coverage as possible, thinking tv, national press, writing a blog to document it, etc. Sure there will be ups and downs through out the year, but hoping to be Phelan Lucky for the most of it and raise as much awareness as possible.
I apologise in advance if you get sick of seeing me in the same clothes, but I have a mission so your support would be greatly appreciate. A pat on the back, a 'you look nice today', high fives, any form of sponsorship, sure it will go a long way to to encourage me to carry on with the campaign.
Watch this space for more craziness, I mean info XxxxX

Phelan-McDermid syndrome is a rare genetic disorder. There are about 1300 registered cases worldwide and our gorgeous daughter is one of them. Emily is non verbal and has no communication skills, she has developmental delay and is functioning at 0-11mths although she is now 4, she has low muscle tone in her arms and legs making it hard and tiring to walk, move around and do everyday activities including feeding herself. She's a total joy to be around and has taught us so much as parents. We celebrate every achievement to the max no matter how small. Her strength and determination amazes us, we are such proud parents.

Thank you so much for your support, it's truly appreciated xxxx

To follow and find out more about 365 days of Phelan Lucky, click this link and like the page:
https://www.facebook.com/365daysphelanlucky

We're raising awareness of #PhelanMcDermidSyndrome #PMSF #PMSFUK #PhelanLucky pmsf.org.uk 22q13.org