Just about nineteen years ago, a mother in Tasmania, Donna Bryan, was desperately seeking someone who would know and understand what she and her husband were going through at the devastating diagnosis of Hurler syndrome for their beautiful daughter Rebecca. She wrote a letter to the Women’s Weekly from which she received many responses. From this small cry for help began our Society.
The Australian Society was the vision of a number of people. It became a reality at the inaugural meeting on 19th November 1983 at the Sir Eric Woodward School, at which13 people were present.
From that meeting we established strong contact with the English MPS Society. The following June, in 1984, at a meeting attended by 30 parents, friends and interested professionals, a committee was formalised with:
Ros Smith (mother of Adrienne MPS III) as President
Helen Coppock (mother of Graeme MPS II) as Secretary
Diane Hawkins (mother of Gregory MPS II) as Treasurer
Amanda O’Reilly (mother of Ben MPS II) and
Gwen Griffith (MPS II mother) as committee members.
The first MPS logo for the Australian MPS Society incorporated the hands of an MPS child, together with the outline of Australia and a boomerang. The logo was devised by Donna Bryan (mother of Rebecca MPS I) and Helen Wheatley (mother of Colin MPS I). The hands, which are still used widely worldwide for international MPS organizations are, in fact, the hands of Simon Lavery (MPS II), the son of the founder of the English society.
In 1984, the Society was still in its infancy. Funds were raised by the NSW Girl Guide Association, Epping Public School, Epping Presbyterian Church and others which enabled the opportunity for the MPS President Ros Smith and Secretary Helen Griffiths to attend the 2nd English MPS Society conference at Harrowgate, United Kingdom. Another Australian representative at the conference was Dr Tony Pollard, Director Chemical Pathology, Adelaide Children’s Hospital. The conference provided many opportunities to meet with other influential people such as Dr Sardharwalla (Manchester Metabolic Unit), Dr Diana Chase and Prof Adonolphi at Guys Hospital, London, Dr Jean Mossman, Head of Biochemistry Great Ormond Street Hospital, Dr Ed Wraith also from Manchester, who later came to Australia to work with Prof David Danks at the Murdoch Institute, and many others.
With the encouragement and support of Dr John Rogers, Dr Ed Wraith (who was then working in Australia) and Margaret Sahhar – all from Melbourne - we ran our first Parent Conference in Albury, New South Wales. At this was our first family conference, we thought it appropriate to focus on the medical aspects of MPS – genetics, biochemistry, clinical descriptions etc.. The conference was attended by many families; some from as far away as Western Australia. The opportunity to actually meet other families affected with the same genetic condition proved invaluable, as did the unbelievable support from the professionals in attendance. Strong links were forged between families.
Here are some comments from these first conference participants:
"I’d just like to thank all concerned for a very lovely and such a well planned weekend and conference, especially where the children were concerned" (Vicki QLD)
"A great weekend had by all. Hope it will all happen again." (Peter)
"It is good to be in the company of others who know and feel what we feel." (Rob, Lisa and Damien)
"An excellent chance to talk informally with a lot of people who have had a lot of experience." (Penny)
"An enlightening weekend and a terrific experience."
"Wonderful conference. I have gotten much from the weekend. Thank you." (Sylvia)
"Tremendous conference – very open and thoroughly enjoyed ... Congratulations to all concerned." (Tony)
"The Committee is to be congratulated on such a well-organised and informative conference. We have gained from in enormously, both medically and emotionally. It was a pleasure to meet so many friendly people, each so willing to help others and share their problems." (Colleen)
"Must express our sincere appreciation for all the hard work entailed in organising such a wonderful, helpful, informative conference. The association of other families in similar circumstances has been of great emotional benefit to us all. (Norma and Verna)
"A very interesting and wonderful weekend. I have learnt a lot from it and I am sure everyone else has too. Many friendships have been made here this weekend. Congratulations to a wonderful hard-working committee. Look forward to meeting again. (Betty, Benalla VIC)
Various committee members had "personal problems" during 1986 which necessitated a slowing down in some areas. However, our greatest achievement was a five-minute segment on the current affairs program Terry Willisee Tonight shown on Channel 7. This featured several families together with Prof David Sillence. We had been trying for some time to gain media coverage, following an earlier segment on The Ray Martin Show and this was seen by many as being a useful tool in which to get the plight of MPS families to the general public.
Our newsletter was also proving a source of concern as articles were few and far between and the time factor in putting the newsletter together was becoming a problem for those involved.
Our second conference was far more relaxed than the Albury conference two years previously. Everyone was allocated a van at the conference venue, thus allowing for informal "get togethers" which everyone seemed to thoroughly enjoy. The conference program was geared to the more practical and everyday problems associated with MPS – education, stress, fathers’ ability to cope and respite care. Again, giving freely of their time, were Dr John Rogers and Margaret Sahhar from Melbourne, together with Prof David Sillence from Sydney and Dr E Robertson from the Adelaide Children’s Hospital. This conference also brought us two representatives from the United Kingdom, Colin and Mary Gardiner, as a result of the contact made at the Harrowgate Conference in the UK. Colin and Mary were certainly great ambassadors for the UK Society and a
fund of practical knowledge and experience.
During the year we were deeply saddened by the death or not one but eight of our special children. One memorial and tribute to a dearly loved Ben O'Reilly (MPS II) was the reprinting of Dr Diana Chase’s book on the Genetics and Biochemistry of MPS disease.
A number of family days were held in a variety of venues and these were well attended.
"The MPS Society has grown from a seed in the mind of Christine Lavery (England) to a tree in just five years, with branches spreading worldwide – in England, Australia, New Zealand, Canada, South Africa, Germany, USA and Japan." (Ros Smith, President)
Through the efforts of Richard Woolmer, uncle of Nicki and Katie Law’s (MPS III), the Society achieved Tax Deductibility in New South Wales. Richard was also instrumental in raising considerable funds towards committee members’ travel to the First International Congress of MPS and Related Disorders in Minneapolis. Denise Law and Sylvia Webb attended the Congress as the Australian representatives and were away for approximately three weeks, visiting families and medical centres and contributing to an information exchange which proved invaluable. It was at this Congress that Sylvia and Denise met Dr Chester Whitley, Assistant Professor Division of Haematology/Oncology at the Department of Paediatrics, University of Minnesota.
A representative was also send to the NH & MRC meeting in Canberra on "Ethical Aspects of Research on Human Gene Therapy".
Much publicity was raised during the course of the year by articles about the Webb family (ML II), Donald family (ML III), Dallimore family (MPS I), Brown family (MPS III), Page family (MPS III), Law (MPS III) and Beehag families (MPS III). This greatly increased public understanding and membership of the Society.
One of our children with MPS underwent Bone Marrow Transplantation at the Prince of Wales Children’s Hospital in Sydney. This was a first in Australia.
Valla Beach, north of Nambucca Heads, was the site of the 3rd national MPS Conference. Dr Chet Whitley from the USA was our keynote speaker who spoke on his experiences of BMT in the States. A relaxed atmosphere was enjoyed by all present. Dr John Nelson (Westmead), Prof David Sillence (Royal Alexandra Hospital for Children), Keith Taylor (Gosford Hospital) and Margaret Cupett (Family Education Unit) all ably contributed to our families’ needs. Prof John Hopwood was to have attended but "that" massive airline strike kept him at home.
Katie Law (MPS III) received an art award from Ken Done in the Special Schools section of UNICEF Art Competition.
The newsletter was revamped and received a positive reception from parents and professionals. New booklets on the MPS disorders, printed in Britain, were a welcome boost to family support and were well received by the medical profession.
There was a major change for the Society in February, 1989 as the majority of the old committee resigned and a new committee was elected with Denise Law as President, Isabel Glasson as Treasurer and Sylvia Webb as Secretary.
We received 42 new memberships during the year. Linking Hands across Australia, our newsletter, was revamped with a new cover design, thanks to Trev Glasson and Sylvia Webb whose ideas crystallised the name. Also, thanks go to Cathy Smith who developed the idea of the artwork and to Courtney Fenton who drew the artwork. The newsletter was accepted as a registered publication and this greatly reduced our postage costs.
The 4th MPS Family Conference in Wollongong was Denise’s first and very successful venture into conference organisation. She wrote an "ode to my ironing board" as she used this as a table, whilst her friend, Carol Porter, typed for her. The conference was attended by 25 families – a total of 102 adults and 41 children – who were well cared for by various service clubs including Quota, Rotary, Lions, Rovers and many others. It was at this conference that it was put to the members that the Society should bid to host the next International Symposium in Australia in 1996.
"MPS is not just a disease that affects the sufferer, but has a devastating effect on every other family member. The conference (will endeavour) to meet the physical and emotional needs of parents, siblings and extended family members." (Denise Law, opening address 4th MPS Family Conference)
"The gradual identification and location of MPS families has blossomed into a friendly and warm association, in which support, understanding and personal friendships have developed. Members now have a wider knowledge of MPS disease in its various forms, the personal problems and trauma that it can bring, an appreciation of the benefit of knowing where to seek help and assistance, and an awareness that love and understanding can alleviate the burden on parents and children." (Ken Hatton, opening address 4th National MPS Family Conference)
In April, 1992 Denise Law and Ros Smith went to Austria to bid to host the 1996 International Symposium on MPS and Related Disorders in Australia. Our bid was accepted and so began a period of intense preparation for this major event.
Ros Smith, with Dr Kris Barlow’s help, revamped our fundraising brochure. Chocolate sales at the national MPS conference were used to purchase a photocopier. Leanne McGill worked hard at trying to make sense of all the presentations from the previous conference into a readable conference document. Fundraising increased thanks to street stalls in Wagga and Gulgong, Busy Bees and Jacaranda Fair groups in Sydney and many families participation in market research.
Denise Law lost both her daughters to MPS in this year and continued with her work for MPS.
The Novotel Northbeach at Wollongong was booked for the International Symposium. In 1993 a large number of Western Australian families were diagnosed with MPS and a sub-group was formed to support them in WA.
A good representation from Australia attended the 3rd International Symposium on MPS and related Diseases in Germany. There, our representatives promoted Australia as the venue of the next international conference.
Our 5th national conference was held in Albury, New South Wales with the local support and thorough organisation of Sylvia Webb. At the conference we celebrated the 10th birthday of the society at a combined disco.
Sylvia Webb resigned as Secretary and the "National Office" was born. Denise Law became executive officer of the Society. Teresa and Anthony Llewellyn-Evans because Newsletter Editors and joined the committee. Ros McDonald joined the Society as Office Assistant and proved herself invaluable.
The year saw the inaugural training weekend for Area Family Representatives which served as an encourager for these valued volunteers from around Australia.
The growth in the Society and the increasing concerns of financial liability to our members resulted in the Society becoming a company limited by guarantee. With this came a change of name to Mucopolysaccharide & Related Diseases Society Aust. Ltd. The name change served to highlight the society as an umbrella organisation, providing support to families affected with MPS and related disorders.
This was a huge step for the Society to take and thanks are owed to Trev Glasson who became our Company Secretary, and to Glenn and Geoff Fisher of the Turner Society for their assistance in setting up our company. Our founding Directors now had the financial responsibility of the Society and the Committee of Management took on the its daily running. This change in structure lead to the writing of Memorandums of Association and a change in membership fee structures. Our stationery was reprinted and our image revamped.
As a small group of parents and professionals we were able to achieve all of our aims for the International symposium – fantastic venue and location, attendance of over 500 people with delegates, children and carers and a mammoth budget to plan and organise. The conference will be remembered as a very Australian conference with its emphasis on families and partnerships with professionals and the professional program was overlaid over the family centred one. It was a conference which highlighted the power of the MPS story. Rapt audiences listened to a group of MPS adults tell their story of the effect of MPS on their life, together with various other family speakers. These stories served to open the eyes of many professionals. At the conference parents and professionals from Australia, joined those from France, USA, United Kingdom, Italy, Germany, Korea, Russia, Brazil, Belgium, Austria, Hungary, Hong Kong, Singapore, Malaysia, Northern Ireland, Czech Republic and New Zealand, in various meetings and social gatherings.
The Australian MPS III Sanfilippo syndrome booklet was completed and launched at the Symposium, thanks to the efforts of Denise Law.
The Kasengele (MPS II) family of New South Wales were finally given permanent residency status. Life members were appointed for the first time in recognition of the invaluable contribution each individual had made to the society. Our present life members are Professor John Hopwood of South Australia, Dr John Rogers of Victoria, Prof David Sillence of New South Wales and Ros Smith of New South Wales.
We finally had our first Victorian MPS committee member with Christine Barro (mother of David MPS II). Christine focused her energies and talents on fundraising. She began an annual fundraising event on Oaks Day in Melbourne and was also the originator and "prime mover" for our Xmas fundraiser, the sale of MPS Xmas cards.
Other highlights of 1997 include:
Denise Law presented the experiences of hospital for families with MPS at the annual Association for the Welfare of Child Health (AWCH) Conference.
Our second Area Family Training Weekend was held in August.
Also in August, Ron and Denise Law travelled to Canberra for the launch of the Orphan Drug Program with America.
An Australian MPS I Hurler syndrome booklet was produced with the help of Debbie Butt (mother of Lisa MPS I) and Prof David Sillence of Sydney.
In 1998 Denise Law resigned as president and Ron Law as a committee member of the Society. Teresa Llewellyn-Evans (mother of David MPS II) was subsequently elected to the role. The MPS Office was relocated to the home of Ros McDonald who continued as Office Manager for two days per week and helped maintain continuity in a period of change for the Society.
Our 7th National MPS Conference was held in Ballarat Victoria, ably organised at the local level by the Victorian MPS Conference Committee and Denise Law as Conference Convenor.
Teresa Llewellyn-Evans and Jo-Ann Davidson-Carrad (mother of Blair and Brandon MPS III) travelled to New Zealand with Prof David Sillence and Dr Jenny Ault for MPS clinics in Wellington and Auckland. The four also attended a family day in Auckland and met many New Zealand families. This was an important time as it strengthened our ties with New Zealand and served to alleviate some of their isolation.
In 1998 we were fortunate to gain sponsorship for the printing of the newsletter by the Rotary Club of Parramatta. We welcomed our new newsletter editorial team - Penny Lister (mother of Sam MPS III), Vaughan Glasson (Mild MPS II) and Carole Hawke (a friend of MPS) - and Teresa Llewellyn-Evans relinquished the newsletter to their capable hands. The look of our newsletter changed - a photograph of "our cover girl or boy" per edition replaced the linked hands on the cover and it was professionally desktop published.
We launched our Australian version of the MPS II Hunter syndrome booklet, written by Teresa Llewellyn-Evans (mother of David MPS II).
Teresa Llewellyn-Evans and Ros Smith attended the 4th International Symposium on MPS & Related Diseases in Vienna, Austria and subsequently visited England and saw the workings of the English MPS Society office in Amersham.
We launched our Mission and Vision statements. For the first time, we acknowledged that we were more than a support group for parents – "we value, nurture and support all those who affected directly or indirectly by mucopolysaccharide and related disorders". We crystallised our aims in supporting our members, promoting partnerships with professionals and promoting community awareness of MPS and its impact on families and carers.
The biggest achievement for 2002 was the hosting of the 8th National MPS Conference in Coffs Harbour, New South Wales. Organisation of the conference was assisted greatly by Janis Greene (mother of Jennifer and Alison MPS III) in Coffs Harbour. We had the largest attendance for a national conference apart from the International Symposium with 115 delegates, 36 children and about 175+ to cater for including carers. It was truly a national conference with delegates from all across Australia and New Zealand. This was the first conference organised using email as the preferred mode of written communication, together with numerous facsimiles and phone calls.
At the conference we launched our new Society logo. This was the result of two years’ hard work by the committee and Christine and Peter Barro of Victoria (parents of David MPS II). The new logo is a positive image of MPS and represents the value, nurturing and support that is a feature of our Mission statement. The new logo will take us forward with its symbolic outward rather than inward focus. The logo is representative of our inclusion of all those whose lives are affected by MPS directly or indirectly – not just parents. It represents the partnership between professionals and families and our hope for the future. The logo was very well received both nationally at our own conference and in the international community.
The conference was also a very proud moment as we launched the world-first Towards Independence, a guide for adults with mild MPS compiled by Vaughan Glasson.
With the resignation of Ros McDonald as Office Manager after the conference, we moved the national office to the home of our new Secretary David Oliver (father of Bowen MPS VI).
In 2000 we started the process of designing a website with the help of Joanna Betteridge, an aunt of two boys with MPS III, Jack and Tom. Also in Melbourne, a group formed to start the process of developing new brochures as the one brochure for all situations was not meeting our needs. This project is still in the pipeline with three planned brochures - one for newly diagnosed family members, one for fundraising and one multi-purpose brochure with an emphasis on medical information. Charisse Ede, aunt of Max who has MPS III, and journalist, helped the Society in publicising MPS in a national on-line medical journal. Charisse was also responsible for an article in the Melbourne Age which highlighted the story of Vanessa and James Scott and their experiences with their son Max.
Teresa Llewellyn-Evans and David Oliver presented at an education day at the New Children’s Hospital at Westmead. The day dealt with issues in educating students with connective tissue disorders in mainstream settings. Two workshops, one for teachers and the second for parents, were ably organised by Dr Jenny Ault.
Teresa Llewellyn-Evans attended the 5th International Symposium on MPS & Related Disorders in Minneapolis and subsequently visited our friends in the Canadian Society in Vancouver Canada. "It was great to have a professional business card to hand out to the people I met."
We held a Strategic Planning Meeting in March, 2001 in Sydney focusing on 2002 conference planning and future directions for the Society. In attendance were various Area Family Representatives from Australia and New Zealand, together with committee and board members. In 2001 we printed new stationery and posters, compliments of the Acorn Women for MPS of Victoria, with a consistent postal address which ensure accommodations to future changes to the committee. A newly designed computer generated fax template made the work of the Society easier.
In 2001 we launched our Australian MPS website thanks to the efforts of Joanna Betteridge of Melbourne. This has resulted in many more families and individuals accessing appropriate information and contacting the Society.
Sadly, 2001 also saw the passing of Vaughan Glasson (Mild MPS II). Vaughan was a much loved ambassador of the Society and we were all an extension of his family. He will be remembered for his booklet for adults with mild MPS and for his willingness to talk and listen with our families and professionals.
April 2002 saw the 9th National MPS Conference held in Canberra, Australian Capital Territory. This was another family-focused conference which brought together delegates from all over Australia and New Zealand with the conference theme "Sharing our story". A record attendance of over 118 delegates, 47 children and 49 carers ensured a busy time for conference organisers.
An important booklet on MPS and Anaesthesia was launched at the conference thanks to the assistance of Dr David Baines of the Children’s Hospital at Westmead. We also extended the range of our logo items to caps, mugs and lapel pin. An MPS Cookbook was launched thanks to the coordination of Joy Read (grandmother of Jameson MPS I) Sandra Brown (mother of Ben MPS II) began the process of preserving our photograph collection in scrapbook format. At the conference we saw her efforts for 2000 conference at Coffs Harbour and 1998 conference at Ballarat.
Our story
Is a journey
Overlaps with all whom we have known and loved
Tapestry of all the children
Partnerships professionals and families
Achievements of this organization are more than just that
Represent people who are worked for the good of others
Gave up their time to organise national conferences,
speak to other families,
develop newsletters,
databases,
information booklets,
publicity,
raising public awareness
Spoke to doctors as friends and colleagues and equals
And at the centre of this is our child affected with MPS who made all this possible.
Details to be provided.
Volunteers wanted to keep this history up to date - please email [email protected] you are interested in being involved.