FSGA Newsletter August 2014 1
IN THIS EDITION:
Welcome
RVA Survey
FSGA 20th Anniversary
Celebrations
New Merchandise
My Fabry Manager
Annual General
Meeting
Life Savings Drug
Program
Amicus Migalastat
Blackmore’s Sydney
Running Festival –
“Partner for Fabry”
Hello and welcome to the AUGUST 2014 Newsletter
Welcome Welcome to the August edition of the FSGA newsletter.
Well, what a night our 20th Anniversary Celebration was!
For those that couldn’t be there, we have a report from that
special evening, for those that made the trip – thank you,
your support and presence was appreciated.
FSGA has some exciting news about a new Resource
available to all Fabry patients – read all about it on page 4.
Also in this edition is an invitation to take part in the
Australian Rare Diseases Survey for Adults. Please take
some time out for this worthwhile survey – you have till 1st
September to complete it – so why not make a nice hot
drink, sit down and spend 15 minutes filling it out.
If you are in Sydney and want to participate in a fundraising
event, please read page 6 for some very exciting news.
Anne Hunter
Secretary – FSGA
RVA Survey You are invited to participate in The Australian Rare
Diseases Survey of Adults. This study is being conducted
between 21 July and 1 September 2014, by the Office for
Population Health Genomics, Department of Health WA in
partnership with Rare Voices Australia (RVA), The Genetic
and Rare Disease Network (GARDN), Genetic Support
Network Victoria (GSNV) and the Association of Genetic
Support Australasia (AGSA).
RVA Survey for Adults
FSGA Newsletter August 2014 2
FSGA 20th Anniversary Celebrations
FSGA held their 20th Anniversary Celebration Dinner on the 26th July 2014 at the Rendezvous Grand Hotel in Melbourne. The night was a huge success with 65 people from all across Australia attending the dinner. Among the guests were old and new FSGA members, industry partners, past and present FSGA presidents, nurses, doctors – we even had a table of delightful teenagers. There were representatives from other Support Groups and people who have been supporters of our members who enjoyed getting to know what FSGA was all about. As a tribute to members no longer with us, we had a Remembrance Corner set up to light a candle or place a picture up while reflecting on our loved ones. Lea was wonderful as our MC and kept the festivities going all night with lucky door prizes, raffles and a few speeches. We had one very special announcement to make during the evening - and that was to induct Megan Fookes, Director of FSGA, as a Honourary Life Member, joining Margaret, Merle and the late Lari. This was kept under wraps and was a surprise to Megan, who through all her dedication, passion and hard work has helped the FSGA go from strength to strength. In Lea’s speech she said: “Megan is a master networker, believe me I have watched her work a room - it’s an amazing site. She influences high profiled people to agree to many of her terms when it comes to patient advocacy and promoting the wellbeing of the likes of you and me! Megan was not content to have us sit by and have treatment based on politicians terms, she made contact with the Fabry International Network to see what the treatment protocol was overseas and demanded changes here. Such was her strength of character and determination. FIN recognised the powerhouse and claimed her as their own. She now heads the National Alliance for Australians living with a rare disease; Rare Voices Australia Ltd employed as their Executive Director”.
Megan receiving her award
Presidents (past and present) cutting the cake
FSGA Newsletter August 2014 3
FSGA 20th Anniversary
Celebrations (Cont’d) After the cutting of the cake by past and present presidents, the remainder of the evening was spent catching up with old and new friends or dancing. A big thank you to all the FSGA Committee for working together to put this wonderful event on. If anyone has any photos they have of the night they would
like to share, please email to [email protected]. If you
were unable to attend please look on our Facebook page for
photos from the evening.
As you are aware FSGA was set up in 1994 on the back of a
story put in the Australian Women’s Weekly. If you have not
seen that story before, please take a look at it now:
1994 AWW article
Last month, the Australian Women’s Weekly ran an article on
their online edition. If you didn’t see it, here is the link: 2014
AWW article
New Merchandise
FSGA have two new items in our merchandise range. The
first is a lovely quality silver keyring that has the Fabry
Disease OMIM number on it. The other is a beautifully put
together 20th Anniversary book. Both of these items are
available on our website FSGA Merchandise.
Please note all our t-shirts are now sold out.
FSGA Newsletter August 2014 4
My Fabry Manager Fabry Support Group Australia (FSGA) are excited to announce we now have a new resource for patients; ‘My Fabry Manager’. It is located on our website – www.fabry.com.au. Or it can be entered manually through http://memarea.fabry.com.au. Important Notice: this area is completely confidential – the administrators of the FSGA website have no access to any of the information you keep here. For more details on how to use this resource please Click Here. This project was brought about by the need for an easier way of recording the data that is required by the Fabry Specialists when attending clinics. It is also a place to keep your medical information in one place.
Annual General Meeting
FSGA are holding their AGM on Wednesday 22nd October at
7.30pm (AEST). An email will be sent to our membership
with the necessary documentation. If you do not receive an
email or would like to be added to our email list, please
contact Anne on 0422 201 013 or [email protected].
FSGA have a position vacant on the Committee. If you are interested in volunteering your time to join the Committee, please contact Sheridan Campbell on: [email protected]. We also need volunteers for working groups, so if you are interested please email: [email protected].
FSGA Newsletter August 2014 5
Life Saving Drugs Program
The public consultation on the Life Saving Drugs Program
(LSDP) has opened. Information on the Review and the
Terms of Reference is available at: LSDP Review.
Submissions by interested stakeholders are due for
submission by 5pm Monday 10th November 2014.
The Department of Health have said in conversation that
anyone on treatment will continue to do so and any newly
diagnosed people living with Fabry disease if their Clinician
has recommended treatment, ‘it is business as usual’. Both
approved therapies for Fabry Disease are listed on the
Federal Department of Health’s LSDP (Life Saving Drugs
Program) to access subsidised treatments for people living
with Fabry disease who meet eligibility criteria. Further
enquiries please contact your state Fabry Centre of
Excellent. http://fabry.com.au/treatments/treatment-centres/
N.B. FSGA doesn’t offer medical advice and recommends any questions or changes to your condition should always be referred to your Fabry Clinician.
Amicus Migalastat Amicus has announced positive data from Fabry Monotherapy Phase 3 ATTRACT Study (Study 012). Migalastat successfully met both co-primary endpoints of compatibility to ERT on two key measures of kidney function. Migalastat also showed compatibility to ERT in plasma Lyso-Gb3. Please read the press release that provides details about Migalastat, the oral, small molecule pharmacological chaperone, and key safety and efficacy results from this switch study. It also includes comments from Fabry experts. Amicus Migalastat Press Release
FSGA Newsletter August 2014 6
Blackmore’s Sydney Running
Festival – “Partner for Fabry” Recently Fabry Support Group Australia (FSGA) and Shire Australia got together to “Partner for Fabry”. As part of this initiative, and in order to help raise much needed funds to assist FSGA continue its important work caring for and representing the Fabry Community, both FSGA and Shire Australia have teamed up and entered a team in the Blackmore’s Sydney Running Festival. The Partner for Fabry team will be running in one of the four events happening on Sunday 21 September as part of the Festival, either the marathon, half marathon, 9km fun run or the 4km family walk. As part of their efforts they’ll be encouraging family, friends and colleagues to support them by making a donation to FSGA. We are encouraging people to get involved. If you or someone you know would like to be part of the running team, you can sign up for the event at http://www.sydneyrunningfestival.com.au/ When you register to run, make sure you sign up to be part of the team by registering to run for: Team Name: Partner for Fabry In order to sign up for the team, you will be required to enter a team password. The password for this team sign up is Fabry (the password is case sensitive). Everyone signing up to participate in the team will receive a team t-shirt for the event. Please contact Anne Hunter at [email protected], or phone on 0422 201 013 to arrange this. If you’re forte isn’t running, then you can support the team by making a donation at https://give.everydayhero.com/au/partners-for-fabry all donations collected in support of the team will be matched by a corporate donation from Shire Australia after the event. Please get behind the team with your support and help us raise as much money as possible.