Rett Syndrome Association of Australia Inc. Presidents Report
28th Annual General Meeting 2016 – 2017
The Rett Syndrome Association of Australia (RSAA) continued to have a positive impact on Rett syndrome in this country, something which has now been onging for the past 28 years.
Those positives include being an important point of contact, not only for families who have a child diagnosed with the syndrome but also others interested in the disorder. We continued to respond to queries and to collect and catalogue information on the syndrome. We again created opportunities for families to get together across Australia. Where possible, we sought to raise awareness of the disorder, indirectly assist Rett syndrome research and the fundraising for such, and most importantly, be there for families and others. We were represented at one overseas Rett conference, and provided financial support for a number of Australian researchers to do likewise.
Each year we face new situations and 2016/17 was no exception. For the first time –
RSAA co-sponsored an Australian researcher to spend time workng overseas with other Rett researchers;
We agreed to participate in a drug trial which is likely to get underway here later this year;
The Association let it be known that it is interested in organising the 2020 World Congress on Rett syndrome.
The 2016/17 Committee consisted of parents and siblings (see page 6) from across Australia with only the Territories not being personally represented. Committee meetings were conducted over the phone once a month. Those Committee members who could make it, met face to face on one occasion, that being in Melbourne at our AGM. Pictured at last year’s meeting were Bill Callaghan (VIC), Jayne Bowden (TAS) (middle) and Kirsty Sale (SA).
On behalf of all those involved with RSAA, I thank each of the Committee for their support and for what they have given of themselves to others.
Annual documentation that is required by the Australian Charities and Not-for-Profits Commission (ACNC) and Consumer Affairs Victoria, was provided by RSAA well within the timeframes for submission.
RSAA website; ‘Rett Syndrome Australia’ Facebook site
Enhancements to our website during 2016/17 included having all bar one session from the 2015 national conference, available for viewing. The capacity to pay membership and/or make a donation by credit card, was also made possible. Even though our website is only three years old, it is likely that it will be given an overhaul during 2017/18.
In addition, RSAA administers the ‘Rett Syndrome Australia’ Facebook site which was originally set up by Alana Lawson in 2013. As at 30 June 2017, that site had 670 members.
Collecting/sharing information, Contacts
As part of our ongoing collection of material relating to Rett syndrome, we continued to monitor medical
journals as a means of being kept informed on Rett syndrome research and management. We catalogued this information as we do with material appearing on the Rettnet, an internet database maintained by the International Rett Syndrome Foundation (IRSF) or rettsyndrome.org as it is now known as, and on Face-book. The catalogues, which have been kept updated since 1989, have proved to be a very useful resource when responding to queries received on particular aspects of the syndrome. It is our aim to soon make that data accessible via the internet to those who are current RSAA financial members.
The Association continued to tap into the various Rett syndrome conferences that take place at regular intervals, be it locally or overseas, in order to collect and share information, advance our knowledge of the syndrome, and liaise with members of sister Associations and the research community.
During 2016/17, RSAA was represented at the Rett 50.1 conference in Vienna, an event organised to commemorate publication of Dr Andrea s Rett’s first article 50 years earlier, on what was to become known as Rett syndrome.
As a lot of the conference content was related to the distant past, not that much new information was forth-coming. Even so, the occasion gave us the chance to canvass support for RSAA holding the next World Congress on Rett Syndrome in Australia, making new contacts, renewing those that we already had, and discussing the possibility of co-sponsoring an Australian researcher to work abroad.
Rett 50.1 conference, Vienna, September 2016
Left to right: Nasim Sangani (Australia), Eric Smeets (The Netherlands), Bill Callaghan (Australia), Ingegaard Witt Engerstrom (Sweden), Leopold Curfs (The Netherlands) and Claude Buda (Australia).
Left to right: Claude Buda (RSAA), Paige Nues (Rettsyndrome.org USA), Yvonne Milne (RSA United Kingdom), Jenny Downs and Helen Leonard (Australian Rett Syndrome Study)
RSAA will be represented at the 5th European Rett Syndr-ome Congress which is to be held in Berlin in November.
Since its formation in 1989, RSAA has established contact with 415 Australian Rett syndrome families, including 9 new families in 2016/17.
Over the past five years, contact has been initiated by the Association, not vice versa as in the past, and was achieved by getting in touch with families who became members of the ‘Rett Syndrome Australia’ Facebook site.
RSAA financial memberships numbered 144 , a total which has varied very little in each of the past 4 years. Needless to say, we are very grateful for this support. That said, we would still like to see more Rett syndrome families, in particular, and other interested persons, becoming members.
Family get-togethers were held in Adelaide, Melb-ourne and Perth (twice). Our thanks go to Kirsty Sale and Kristy Klingner (both from SA), Paul Wellington (VIC) and Caroline Dempster (WA), for the roles that they played in staging these events. It is important that RSAA keeps creating opportunities for Rett syndrome families to meet in person. One of the gatherings held in Perth was arranged to coincide with the visit to that city by Singaporean Rosalind Agatha and her 14 year old Rett syndrome daughter, Rachael.
2016/17 was marked by a surge of support for RSAA from persons connected in some way with an individual who had Rett syndrome. Rhian Pearce (QLD), sister of Emma who has the condition, ran a half marathon; Kerrin Bass (VIC), friend of the late May Hallenstein, organised a 100 km walk; and Sophie Durnan (VIC), friend of Rett girl Giulia Nesci, particip-ated in Run Melbourne. All the sponsorship they received was donated to our Association. An added bonus was the focus that they gave to the syndrome. An anonymous donor gave $40,000. The Morley family (VIC) whose 12 year old Rett daughter Ella passed away in 2008, organised an afternoon at the movies; and Amy Baldock (SA) passed on proceeds that she received from make-up parties. In addition, many families and/or relatives, included a donation when taking out membership.
Thank you to everyone who saw fit to fundraise for, or donate to, RSAA. We feel very privileged to be thought of in this way.
The RSAA Committee has the view that if the Association can do better at promoting itself in terms of what it has done, what it does and what it hopes to do, then even more support will be forthcoming, be it in the form of increased membership or more activities like those that I have just referred to.
Monies that we received were used, in part, to provide funds to several Australian researchers to enable them to discuss their findings at overseas conferences . Wendy Gold and Nasim Sangani from the Kids Research Institute (Westmead, Sydney) received assistance from us to go to the US and Russia, respectively. Helen Leonard and Jenny Downs from the Australian Rett Syndrome Study (Perth), both presented at the Rett 50.1 conference in Vienna, having been helped to do so by RSAA.“I can confirm that the Department has reviewed the selection criteria for the additional DSP medical reviews, and as a result DSP recipients with Rett Syndrome will now be exempt from these reviews in the future”.
Nasim was also the beneficiary of funds from the Association to enable her to spend 6 months working with fellow researchers at the Rett Expertise Centre in Maastricht. As stated earlier, our involvement in this collaborative effort between The Netherlands and Australia, came about following discussions that e had with the interested parties at last year’s Vienna conference.
The Rett Expertise Centre is also in the process of developing international clinical guidelines relating to the assessment, intervention and longer-term management of communication in individuals with Rett syndrome, a project which kicked off in February 2016. Following an invitation from the Centre, RSAA is now playing a role by providing feedback on the guidelines as they develop.
During 2016/17, CentreLink conducted reviews of Rett syndrome individuals and others, who were receiving a Disability Support Pension (DSP), to ascertain whether they were still entitled to receive it. History was repeating itself as the same thing happened 15 or so years ago. RSAA was involved in having it rescinded or so we thought.
On this occasion, RSAA member Mike Richardson (SA), father of 23 year old Bronte, completed her review but at the same time contacted his local Federal Member of Parliament (MP) detailing how the process was a waste time and resources for both CentreLink and Rett synd-rome families. The MP took the matter up with the Minister for Human Services who subsequently advised that “I can confirm that the Department has reviewed the selection criteria for the additional DSP medical reviews, and as a result, DSP recipients with Rett syndrome will now be exempt from these reviews in the future”. Thanks to Mike, a lot of people were spared unnecessary hassle.”I can confirm that the Department has reviewed the selection criteria for the additional DSP medical reviews, and as a result DSP recipients with Rett Syndrome will now be exempt from these reviews in the future”.
The Australian Hellenic Educational Progressive Association which is based in Sydney, wished to support research into the syndrome by holding a dinner. Five Rett syndrome families showed their appreciationfor this by attending on what was a very stormy night in the harbour city.
It is in Sydney that RSAA intends to stage the 9th World Congress on Rett Syndrome in 2020. The decision to do so was not taken lightly as it will be the biggest chall-enge ever faced by the Association. An organizing Committee has been formed as has the start of a scientific Committee. A survey of Australian families, overseas sister Associations and others, conducted by RSAA in January, indicated good local support for holding the Congress here but a reluctance from persons in Europe and North America to attend because of distance and/or cost. One factor in deciding to stage the Congress here is the opportunity it presents in providing a focus on the syndrome not only in Australia, but also throughout Asia and the Pacific. World knowledge of the Rett syndrome scene in these latter areas is very limited.
Newron Pharmaceuticals, an Italian based company, approached RSAA to ascertain if we would be part of an international clinical trial (STARS – Sarizotan Treatment of Apneas in Rett Syndrome) which it is hoped will see the drug alleviating the breathing problems evident in the syndrome. We accepted the invitation. The trial for those Australian Rett syndrome individuals who meet the criteria for inclusion, will take place in Perth and Melbourne. Our role will be to promote the trial and assist participating families with their travel and accommod-ation where necessary.
In May 1990, Peter Quirk whose Rett syndrome daughter Danielle was then 6 years old, competed in the annual ultra-marathon run (1,005kms) from Sydney to Melbourne and finished third. It was an absolutely incredible effort as Peter was not a professional runner unlike most of the other competitors. Given his prominence throughout the race, he generated considerable public awareness of his daughter’s condition. Tragically, she passed away the following year.
A family friend subsequently published a book about Peter’s run entitled “Danielle’s Dad” for which moves are afoot to transform it into a motion picture. RSAA has been a contributor during the film’s research phase.
Other examples of awareness raising activity included 3 year old Alessia Daniel’s father, David, featuring on an episode of the television show ‘Bondi Ink’ on Channel 11; Rebecca Watson and her 6 year old daughter Marlee appearing on Perth’s 9News channel; while newspaper articles referring to the syndrome were published in the Blackall Leader, Dubbo’s Daily Liberal, the Gladstone Observer and the Adelaide Advertiser. Our thanks go to all those who help to spread the word about Rett syndrome.
The RSAA banners that we created for use at our national conference in late 2015, are proving to be a very successful identifier for our group having been on display at several fundraising functions over the past 12 months.
The role that RSAA plays in assisting Rett syndrome research has continued to be of an indirect nature as has already been pointed when referring to the funding that we provided to Australian researchers partaking in Rett- syndrome specific events overseas and Nasim Sangani’s 6 month placement with the Rett Expertise Centre in The Netherlands, as well as our involvement in the upcoming drug trial. It is one of our aims to support Australian research, a stance that recently needed reinforcing after having received a request from the Rett Syndrome Research Trust (USA) for assistance with the latter’s capacity to raise money in this country.
So we push on –
We are going to organise a World Congress which will involve a lot of work on our part
We will be facilitating the trial of the drug sarizotan
We will be represented at the upcoming European Rett Syndrome Congress in Berlin
Our website will almost certainly be revamped
We will have a new accounting package to become familiar with
We will continue to do those day to day things which, we believe, provide support for our families and others.
Thank you again to the members (see below) of the Committee for their involvement in 2016/17, to those interstate
members who gave up their weekend to be here, and to all those who supported the Association during that period
and previously. In 2017/18, RSAA will continue to look at how to improve the way it does things and be of further
service to Rett syndrome families in Australia.
Finally, I extend the Association’s gratitude to its Vice-President Claude Buda for enabling us to use the premises of
Global Food Equipment for our annual general meeting and the many many things that he does behind the scenes,
to our guest speaker James Shaw, and to all of you who have come along today.
23 September 2017
Members of the RSAA Committee – 2016/17
Executive Relationship to Rett syndrome
Bill Callaghan (Victoria) – President Joanne’s father
Claude Buda (New South Wales) – Vice President Annelise’s father
Caroline Dempster (Western Australia) – Secretary Charlotte’s mother
Peter Werchon (Victoria) – Treasurer Michelle’s father
Sue Hallenstein (Victoria) – Family Support Co-ordinator May’s mother
Fiona Bell (Victoria) Alivia’s mother
Jayne Bowden (Tasmania) Jessica’s mother
Tony Cagliuso (South Australia) Raquelle’s father
Liz Davies (Victoria) Alana’s mother
Kristy Klingner (SA) Lilly’s mother
Hayley Rikihana (Queensland) Mia’s mother.
Kirsty Sale (South Australia) Isla’s mother
Madeleine Saric (Queensland) Jordane’s sister
Paul Wellington (Victoria) Mia’s father.