10th National MPS Conference

10th mps conf

10th mps conf1A wonderful and rewarding conference was held from Friday 16 April to Sunday 18 April in Melbourne.  Details of conference papers and reports will be added to this site over the coming months and will be included in the Linking Hand.  Please keep posted.

Thanks are due particularly to Wendy Boon and Vanessa Scott for their leadership and hard work in organising and conducting the conference.

Report on the Conference

Well we did it ! Melbourne hosted the 10th National MPS Conference on the 16th-18th April with great style, culture and of course near perfect weather!   What more could we have asked for? (Perhaps the wind and those showers on Saturday afternoon could have held off just a little longer).  For those of us from Melbourne who experienced the following weekend’s storms and squalls we didn’t do too bad.

The Conferences are always a great opportunity to renew old acquaintances and to make new friends. This year we welcomed 7 new families and 11 new professionals - this was really great and we all appreciated everyone’s participation.  The Carlton Crest Hotel staff members were very helpful with every aspect of the Conference, from comfortable accommodation and great facilities and of course the food was terrific.  I hope Stephanie Oats from SA enjoys her free night’s accommodation, one of the prizes drawn from Saturday night’s raffle. The Children had a great time and we all enjoyed the terrific BBQ at the lake.  It was a fabulous opportunity for all to listen to the music therapist, play with the farm animals and of course the face painting was amazing.   The Carers and coordinators did a great job in making sure everything ran smoothly. As you can imagine things can get a little tricky, I know my son Max did his very best to have a swim at the aquarium, hopefully the sharks nests will recover!  

We were very fortunate to receive financial support from a wide range of corporate and philanthropic sponsors. They included (in alphabetical order) Biomarin Pharmaceuticals, Genzyme Australasia Pty Ltd NSW, Paul Newman Foundation, Rotary Club of Berwick, Ryan Boon Memorial Fund, The Great Aussie Bush Show, and Transkariotic Therapies. We also received Grants, Donations, Goods and Services from over 79 individuals, foundations and companies.  Without this generous support we would not be able to hold our Conferences. We thank to all of these people and those who gave of their time to ask for this support.

The presenters at this year’s conference did not let us down. They gave a great insight into treatments, therapies and studies in a clear and thoughtful way. The feedback has been very positive regarding the content of the program.  It is great to continue to receive the support of the Doctors, Nurses and Professionals.  Most of the speaker’s abstracts are available on our website as detailed below.  

It is an exciting time for many families as they hear about clinical use of enzyme replacement therapies, and other ERT trials. This has also opened the door for new approaches we may need to take as a society in order to secure government support to fund these therapies in the not to distant future. We have also been challenged with the ethical debate over selection for trials and newborn screening. We have also confirmed our most important role is to support all those affected with MPS and Related Diseases.

We look forward to working with some new faces on the committee and to get your feedback regarding the new challenges we face as a Society and the direction we need to take. Let us know what is important to you and your situation.

Things are already moving forward in preparation for next MPS and related Diseases Conference in 2006. Queensland here we come!

Vanessa Ede-Scott

Vice President, Australian MPS Society

2004 Annual General Meeting

The 2004 Annual General Meeting was held at the Conference on Saturday 17 April 2004.  

The Society elected a new President, Wendy Boon and a new Vice President, Vanessa Scott.  David Oliver remains as Secretary and Greg Moran remains as Treasurer.  New committee members are Patricia Morgan, Ingrid King and Joanna Betteridge.

The Society noted with thanks the great work that Greg has done over the last twelve months carrying both the roles of President and Treasurer.