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 secretary@fabry.com.au. 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 secretary@fabry.com.au.

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: sheridan@fabry.com.au. We also need volunteers for working groups, so if you are interested please email: secretary@fabry.com.au.

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 secretary@fabry.com.au, 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.