2010 International Symposium on Mucopolysaccharide and Related Diseases

 “Translating Research into Clinical Reality”

Papers and presentations from the conference are now ready for access and can be found at the Conference Website. 

International MPS Network

The MPS International Network is the official body of the patient associations representing MPS and MPS Societies at a European and global level. The aims of the Network are:

• To act as an independent forum for MPS Societies and relevant patient associations at a European and global level, including supporting each other and emerging new patient organisations representing MPS.

• To promote the well-being of those affected by Mucopolysaccharide and related Lysosomal diseases through the best practices of clinical diagnosis, management and treatment.

• To promote public and professional awareness of Mucopolysaccharide and related Lysosomal diseases.

• To oversee the nominations for an MPS Society or relevant patient association to host the International Symposium on Mucopolysaccharide Diseases and to preside over the decision making, forward planning and reporting.

• To identify research priorities and potential collaborations and where appropriate, work in partnership with the academic community and the pharmaceutical industry.

• To develop relationships and partnerships with other Lysosomal Storage Disease Groups for the purposes of collaboration and joint learning.

Please have a look at their new website at http://www.impsn.org/ for more information.

MPS Awareness Day 2010

The Australian MPS Society invites you to help us celebrate MPS Awareness Day on 15 May 2010.

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 2010 to tell everyone they know about MPS and to increase public awareness of MPS. 

Family Stories

We would like to have some current family stories which can be used by the Society to encourage and inform public awareness and media coverage.  Would you or your family be willing to provide a case study, a story about you or your family's experience of living with MPS or a Related Disease?  Please talk to a Committee member about this by emailing us.

2010 Australian MPS Society AGM

The Annual General Meeting of the members of the Mucopolysaccharide & Related Diseases Society Aust. Ltd. was held at

The offices of Genzyme Australia Level 1 12-24 Talavera Road North Ryde NSW 2113

On Sunday 30th May, 2010.

Read our Summer 2010 Linking Hand

Please click on this link to download a pdf copy of Linking Hand

National Disability Insurance Scheme

Read our Spring 2009 Linking Hand

Please click on this link to download a pdf copy of Linking Hand.

MPS Family Meeting in Melbourne - 20 September 2009

An MPS Family Meeting (click on this link for details) with Dr Paul Harmatz was held in Melbourne on 20 September 2009.  This meeting was a follow up to our meeting earlier in 2009 with Prof Lorne Clarke from Canada, which was, from all reports, a very successful meeting.  Dr Harmatz visited Australia as a guest of Cedarglen and Biomarin and this opportunity was arranged by them.

Read our Winter 2009 Linking Hand

Please click on this link to download a pdf copy of Linking Hand.

ConnecTeD Picnic-in-the-Park

Elaprase Guidelines

Please click on this link to see the Government's Guidelines on the use of Elaprase through the Life Saving Drugs Program.

Linking Hand Autumn 2009

Please click on this link to read the Autumn 2009 Edition of Linking Hand

MPS Information Session with Prof Lorne Clarke in Melbourne

An excellent MPS Information Session was held at the Royal Children's Hospital in Melbourne on 15 March 2009. The guest speaker was Professor Lorne Clarke from Canada, an expert in Lysosomal/MPS Diseases.  We will keep you informed of any other similar opportunities that arise.

New Advisory Structure for Medicines Policy

The Australian Government announced in early February 2009 arrangements for the new advisory structure to support Australia’s National Medicines Policy.

Please click on the link below for more information:

http://www.health.gov.au/internet/ministers/publishing.nsf/Content/mr-yr09-nr-nr012.htm?OpenDocument&yr=2009&mth=2

MPS Assistance Program (MAP)

This is a  funding scheme which can offer financial assistance to individuals and families affected by Mucopolysaccharidoses, and to allow a fair and equitable way to support families attending the biannual National conferences.

Please click on this link for more information - MAP

2008 MPS Conference in Christchurch NZ

1st Asia-Pacific Lysosomal Conference and 12th National Australian MPS Conference
Christchurch 20th – 23rd November 2008

After 2 years of planning, fundraising and gathering together some of the world’s leading experts in Lysosomal diseases, the excitement began to build with families and professionals looking forward to coming down under to meet, share information and provide a knowledge base that is difficult to gain in our part of the world. What started out as an Asia-Pacific conference became an International meeting with Professionals and other support group leaders coming from, Germany, Norway, USA, Japan, Hong Kong, United Kingdom, Israel, Canada, Australia and New Zealand.

The opening of conference was held on Thursday 20th Nov, at 6pm on the Village green at the stunning Chateau on the Park, as the sun began to set.

Delegates were welcomed by KoTane the Cultural experience group from Christchurch. Prof John Hopwood from Adelaide was chosen as the conference chief and Bowen Oliver MPS6 represented all those affected by Lysosomal Disorders. Peter Joyce from the Christchurch school of medicine opened the conference with John Forman LDNZ and David Oliver from MPS Aust. Ltd, responding. It was wonderful to finally see everyone gathered together talking, meeting for the first time and renewing old friendships.

Friday began the first full day of the conference program covering a very wide range of topics. The Plenary addresses were presented by Prof. John Hopwood Australia, Steve Walkley USA and Brian Winchester, UK. Their presentations gave an overview of Lysosomal Diseases, The challenges of LSD’s in particular the problems faced in trying to cross the blood brain barrier the and central nervous system, and Biochemical and Molecular diagnosis of Lysosomal Diseases.

Jonathan Cooper presented a very interesting presentation on Batten disease in mouse models and the ability to study the pathogenesis at multiple stages of disease progression which is not feasible in the human disorder. Kim Hemsley presented a wonderful presentation on “What’s happening in Sanfilippo Research”? Families whose children are affected with this disease have waited a longtime for research to progress to a level where there are a number of things happening that could in time benefit their disorder.

Ed Wraith from the UK discussed Existing Therapies their benefits and limitations. Bone Marrow transplants have been available for some of the LSD’s for a number of years but is only truly effective if the child is diagnosed early and transplant is done early. Enzyme replacement therapy is a safer approach but is ineffective in disorders affecting the brain as the enzyme is unable to cross the blood brain barrier. ERT is very expensive and is not available to patients from countries that have other competing health care needs.

Later in the day we looked at emerging therapies for Morquio A, Alpha Mannosidosis, Pompe disease. It is exciting to see other Lysosomal Diseases getting to the point of clinical trials and clinic use of these life saving drugs, the day closed with a Poster viewing session.

The next day we looked at the clinical management of these diseases and looked at other therapies out on the fringe. After lunch the conference was broken down into workshops for families and professionals. Each workshop had three short presentations and then open discussion, where families could ask questions and share information on how they manage their particular disorder.

The conference closed at 5pm allowing everyone to have a break and prepare for the Gala Dinner celebrating the 25th Anniversary of the Australian MPS Society.

The gala dinner was an opportunity for everyone to get dressed up and enjoy some good old Kiwi hospitality. KoTane came back and entertained us with a haka, poi dance, stick games and interacted with the audience. It was wonderful to see everyone taking part and having some fun. Later in the evening LDNZ honored Prof David Sillence Westmead Children’s hospital Sydney, Australia and Prof. Bob Jolly, Massey University, Palmerston North, New Zealand, with Life time awards.

Prof Sillence (Australia) has played a very special role in the lives of many New Zealanders affected by LSD’s. In the 1990’s he would come to New Zealand and hold specialist genetic clinics at a time when this service was not available to New Zealand families. He would also bring NZ families to Sydney for full medical work ups. His compassion and care of all families affected by these diseases has been truly outstanding. Dr Jim McGill (Australia) also honored David and presented a small presentation of his life.

Prof Bob Jolly (New Zealand) has spent his life working on Lysosomal Diseases and in the early days discovered Alpha Mannosidosis in Angus cattle in New Zealand. These discoveries lead to an understanding of the human disease and eventually lead to successful Bone Marrow transplants being done on patents who were diagnosed early. His work has also been in the field of batten disease and more lately in Sanfilippo disease.

LDNZ presented the Australian MPS Society with their 25th Anniversary cake and David Oliver did a fantastic presentation outlining the history of the MPS Society. There was a photo call for the Past presidents of the MPS Society and we were thrilled to have Denise Law, Teresa Llewellyn and Wendy Boon present on the night.

Sunday the last day of conference bought us all together again to discuss the issues of New Born screening and Access to Medicines. New Born Screening looked at applying the science, applying it to the program and the ethical issues of new born screening.

And finally Access to medicines the Australian experience and what are we going to do in New Zealand to get access to Enzyme Replacement therapies. LDNZ has much work to do in this area and the time is now right for us to start the advocacy for our New Zealand patients.

The conference was very nicely summed up by Dr Dianne Webster with David Oliver closing the conference and inviting everyone to join together for the last time with a combined family/professional lunch.

Jenny Noble
Conference Convenor
Secretary/Treasurer
Lysosomal Diseases New Zealand

Please also see a report and photos in the latest Linking Hand

Please click on this link to read reports on the conference in an excerpt from the UK Winter 2008 MPS Magazine

Click on this link to see some conference photos

Lysosomal Diseases New Zealand was very proud to host the 12th National Australian MPS and Related Diseases conference and the 1st Australasian Lysosomal conference in Christchurch New Zealand, November 20th-23rd 2008.   Click on this link to view LDNZ Conference information.

New Hunter Websites

Excerpt from email from Laura Moldovan to Greg Moran (Treasurer of the Australian MPS Society):

While conducting some research in worldwide MPS Societies I decided to write to you about what we think would be a valuable addition the society’s library of knowledge in mucopolysaccharidosis type II (MPS II, Hunter disease).

For the past 2 years our group was involved in creating an educational software project: The Hunter disease eClinic, designed to meet the needs of clinicians, biologists, geneticists, biochemists, and other healthcare professionals who are interested in independent learning about a rare, genetic metabolic disease, mucopolysaccharidosis type II (MPS II, Hunter disease).

It is a pilot project, first of its kind as far as we know, and so far met with a lot of enthusiasm in the scientific community being characterised as a valuable resource that covers all the aspects and science regarding this disease.

The software was launched in early summer, for the 10th International Symposium on Mucopolysaccharides and Related Diseases in a both CD (Windows/Mac) and web format. The web version can be accessed at our group's web-site under "NEW: Educational Resources" on our group home page: http://www.sickkids.ca/lysosomalresearchgroup/

The direct link to the educational software is: http://www.sickkids.ca/lysosomalresearchgroup/contents/Hunter/Hunter.asp however the user will have to be warned that they need “Flash Player” to be installed on local machine in order to be able to view the program and also to not use the browser back button.

Warm regards,

Laura Moldovan, Clinical Research Analyst,

Computer Teaching SW http://www.sickkids.ca/lysosomalresearchgroup/

The Hospital for Sick Children

Clinical and Metabolic Genetics

525 University Ave

10th floor, Suite 1045

Toronto, Ont M5G 2L3, Canada

International MPS Online Forum/Discussion Group

Please note that there is an international MPS Forum site found at http://www.mpsforum.com/forum/ which is the MPS/ML Forum Dot Com - An Internet Gathering Place for MPS/ML Families. 

This site has no connection with the Australian MPS Society.  We cannot guarantee or vouch for any information or view expressed in the forum and have no control whatsoever over its content or use.  Any use of the forum is at the users own risk.

BioMarin Announces Program for ERT for Treatment of MPS IVA - Morquio A Syndrome

Please click on this link to read BioMarin's Announcement.

MPS I Market Survey Results

Please keep posted, we will provide these results as soon as authorised to do so.

Inspiring International Story of an MPS II Affected Adult

http://www.speakwell.com/well/2004winter/simon.php  Please click on this link to read Simon Ibell's story

Annual General Meeting 2008

The AGM for 2008 was held on 13 April 2008 in Sydney.  The Board and Committee are delighted that David Oliver has agreed to take on the role of President for the next year.

The Committee offers its very grateful thanks to Vanessa Ede-Scott, Lillian Lodewyk and Louise Jessop who have stepped down from the Committee.  The Committee welcomes Nicole Millis to the Committee.

International MPS Awareness Day - 15 May 2008

To increase awareness of Mucopolysaccharide and Related Diseases, the international MPS Community has decided that we should annually hold an Awareness Day on 15th May.   The first ever Awareness Day was celebrated on 15 May 2007.   Those on our mailing list were sent bumper stickers and postcards to provide to family, friends and medical and other carers to help raise awareness of MPS.

The Society would be interested in your ideas for how to promote MPS Awareness at our next MPS Awareness Day on 15 May 2008.

Strategic Planning for the Society for the next 5 years

The Committee of Management and Board of the Australian MPS Society are current working on a strategic plan for the Society for the next 5 years.  A planning day was held on 21 April 2007 and a further get together was held on 16 June.  Details of our strategic plan and reviewed Mission and Aims will be posted in due course.