MPS and Related Diseases Society Australia
Description
The MPS Society supports individuals affected with MPS, parents of affected children, other relatives and friends of affected children. Our Aims Are To:
1 act as a support group for our members through
1. the provision of local family support networks,
The MPS and Related Disorders are;
MPS I: Hurler/Scheie
MPS II: Hunter
MPS III: Sanfilippo
MPS IV: Morquio
MPS VI: Maroteaux-Lamy
MPS VII: Sly
MPS IX
ML I, II, III, IV
Wolman Disease
Fabry Disease
Farber Disease
Fucosidosis
Galatosialidosis I and II
Gaucher
Krabbe Disease
Pompe Disease
Tay Sachs Disease
Sandhoff Disease
a-Mannosidosis I, II
b-Mannosidosis
Metachromatic Leucodystrophy
Batten Disease
Vogt-Spielmeyer Disease
Niemann-Pick Disease Types A, B, C1 and C2
Northern Epilepsy and
Schindler Disease
2. the publication of quarterly newsletters,
3. the holding of biennial National Conferences and
4. by providing relevant information;
2 promote a partnership between families and professionals, both locally and internationally;
3 promote community awareness of MPS and its impact on families and carers.
Tell your friends
RECENT FACEBOOK POSTS
facebook.comRare Voices Australia
Please share this story on the FB pages of your local, State and Federal member. Since April 2016 our Morquio A community has been waiting a decision on the funding application for Vimizim. This decision is having a dramatic effect on those families who unfortunately did not make it onto the trial. Compassionate access for these patients has been limited and sadly cannot be sustained long term. Our govt has had ample time to reach a decision. All literature indicates that early access to treatment yields the best future outcomes. We cannot continue to expect children, young adults and adults to wait. It is simply unacceptable.
REMINDER TO ALL AUSTRALIAN FAMILIES AND FRIENDS: Memberships are DUE in JANUARY! Please send in renewals of membership via post or email- all info can be found on the Pinned Post. MPS Adults membership is free however, we do need a copy of the membership form for our records and to update any details that might have changed. It is a conference year everyone so be sure to renew memberships so that conference info can be mailed out to you. Thanks The Board
Mick Fanning meets sick young fan
Another of our MPS superstars. Daria Ward is a 17yo with Hurler syndrome (MPSIH) who had her day brightened a little when Aussie surfing legend, @Mick_Fanning popped by for a visit. Thanks to @morningshowon7 for the shout out to Miss D! Our MPS kids and adults are pretty incredible.
Canberra Raiders
Meet Dre Pritchard one of our Hunter syndrome (MPSII) boys. He was granted a Make A Wish wish which was to meet and train with the National Rugby League's Canberra Raiders. I think it's safe to say from the photos that all of Dre's wishes definitely came true this weekend. Thank you to the Make A Wish foundation, the NRL and the Canberra Raiders for making this special little boy's weekend so wonderful.
Our NDIS speaker attending the MPS information seminar on Monday the 31st October is Mark Clayton from Sunnyfield. Mark hopes to answer many of your questions. If you have a question you would like asked and aren't attending please send it to me and I will ask for you. Don't forget if you need assistance with transport or parking cost please let me know. Vanessa - operations.mpsaust@gmail.com or inbox me
MPS Update and NDIS Q & A
MPS Update and NDIS Q & A
MPS Update and NDIS Q & A
Community to farewell Jayda Hannaford
Thinking of the Anna Hanford family today sorry I can't be there but with you in spirit. The MPS and Related Diseases Society Australia is saddened to lose another of our beautiful young people and we will continue to advocate and raise awareness of these devastating diseases and always with Jayda in our mind. Vanessa Ede-Scott
With great sadness I wish to let you all know that beautiful Miss Jayda grew wings and became an angel last night. Fly free princess. Run. Sing. Dance. Sending love and support to the Hannaford family and everyone whose life has been touched by this beautiful girl.
Timeline Photos
All current members invited!
Ask A Mate | RUOK
Today is National RUOK? Day. Everyone of us here knows how hard this road we travel can be. It's so important that we look after ourselves and each other. So I ask each of you: RUOK? If you need a chat or vent don't hesitate to say so.
Quiz
