MPS Family Information Workshop at the RCH in Melbourne - March 18th 2014

Speakers:

• Guest Speaker: Dr. Rolando Cimaz - ‘Musculoskeletal Problems in MPS’
• Very Special Kids – The importance of respite
• Carers VIC – Self care and carer well being

Morning tea and Lunch will be provided

Please join us on:
Tuesday 18th of March 2014 
9:30am -12:30pm

Venue:
Royal Children’s Hospital. 50 Flemington Rd. Parkville.
Meet at the ground floor of the Murdoch Childrens Research Institute
reception desk

RSVP: This email address is being protected from spambots. You need JavaScript enabled to view it.

View the PDF for more information

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MPS Awareness Day

MPS Awareness DayThe Australian MPS Society invites you to help us celebrate MPS Awareness Day on 15 May.

The International MPS Network describes the purpose of International MPS Day as follows:

International MPS Day began as a way to honour everyone in the MPS Community, to recognize, remember and rejoice in each other.

On International MPS Day we:

• Remember all the children and adults who suffer from MPS diseases.
• Think about the children we have lost.
• Think about the doctors and scientists who are dedicated to finding a cure for MPS.
• Remember each other and be thankful for the strength and support we both give and receive.

The Australian MPS Society encourages all our members and affected families and friends and all professionals involved in the treatment of MPS and Related Diseases to use the opportunity offered by MPS Awareness Day, 15 May to tell everyone they know about MPS and to increase public awareness of MPS.

Please enjoy this selection of MPS Family Story videos which our Australian and International MPS Family members have put together to tell their story!

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MPS Awareness Day - Kaitie - MPS1H

MPS is a group of rare diseases.
MPS is short for Mucopolysaccharidosis.
MPS Awareness Day is May 15! (worldwide)
This is my video about my daughters journey so far with MPS1 Hurler Syndrome. She inspires and encourages me every day. And every day i am grateful that she is here with us to teach and to touch the hearts of everyone she meets.
links at the end of the video are:
www.mpssociety.org.au
www.mps1disease.com
www.caringbridge.org/visit/kaitie

the song is Janelle - Amazing. no copyright infringement intended

http://youtu.be/GGrFsn7IAuU

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