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2012 Annual Newsletter

Welcome to the AGSN’s first Annual Newsletter. We have a number of exciting fundraising events and some research news to share with you. We thank you for your support so far and hope you continue to work with us to help families and individuals, and ultimately to work towards a cure for Galactosaemia. In our first year we have raised almost $25,000 for Galactosaemia. This money will be used to fund medical research and help support people living with Galactosaemia and their families in Australia.

RARE DISEASE DAY 2013
The AGSN hopes everyone is supporting Rare Disease Day. We would love to hear how you supported the day. One rare disease standing alone has a huge challenge ahead, but standing together we can make a difference!

2012 Annual Newsletter

RARE DISEASE DAY FUNCTION 2012
29 February 2012 @ The Wine Centre in Adelaide South Australia
This cocktail function was a great opportunity for the South Australian Galactosaemia community to meet and support each other, while spreading awareness of Galactosaemia. The attendees were able to listen to Dr Janice Fletcher talk about the medical side of what We Anna Galactosaemia is and how it affects patients. to hear from were also very privileged Craven, who has classic Galactosaemia. Anna spoke about her life and how Galactosaemia has affected her. Seeing Anna speak on the night was truly inspirational. She is such a strong Anna, thank you person and provides great support for others living with Galactosaemia. very much from everyone that was at this event!

Support Needed !!
The AGSN is run by volunteers and all the money raised goes straight to helping people and families with Galactosaemia. Would you like to help? We would love to hear from anyone that would like to support the AGSN. Have you ever wanted to have a go at event planning? Can you help us improve our website or the layout of this newsletter? Do you have some great recipes or tips you would like us to add to our site? Or generally just want to get involved?

PLEASE CONTACT US agsn@agsn.org.au or find us on facebook

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2012 Annual Newsletter

GALACTOSEMIA FOUNDATION CONFERENCE IN DALLAS
The conference was held from the 19th to 21st of July 2012 at the Hyatt Regency Dallas Fort Worth. Approximately 450 delegates attended the conference. Attending the conference in Dallas certainly opened our eyes to a number of aspects of Galactosaemia of which we were not previously aware and the conference was a very important learning experience for us. We were also humbled for Chris (AGSN Founding Trustee) to be given the opportunity to introduce the AGSN to the general session of the conference. Chris spoke of the success and challenges that the AGSN has experienced to date and gave the conference a general overview of how Galactosaemia is treated in Australia. During the conference there were a number of opportunities to talk with other families and hear their stories of living with Galactoasemia. We found this to be an amazing experience, to be sitting with so many other families that have had similar experiences when previously you may have felt alone. For parents with young children you gain an insight to what your child’s future may hold and learn tips to help your child have a successful education and social experiences. Another great aspect of the conference was the chance to stock up on dairy free treats, including chocolate smarties! It was also great to meet another Australian family at the conference and we will now be long time Galactosaemia friends! We hope to see many more Australian families at the conference in 2014.
We are privileged to be able to share the information we obtained at the conference via the AGSN’s website at www.agsn.org.au/dallas-2012. These summaries are easy to download and can be given to doctors or teachers for their reference.

Travel Grants to the US Conference Check it out!

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2012 Annual Newsletter
FUNDRAISING by Carly Alleway
Are you KEEN and WILLING to organize an event that will raise funds for Galactosaemia research but STUMPED for ideas? Are you feeling uncertain about what type of event you could choose? Most of us would ideally love to organise an event that is enjoyable and effective at raising funds yet not too overwhelming to co-ordinate! Many who have organised a fundraiser in the past will tell you the same thing, “START WITH SOMETHING THAT YOU LOVE.” Think about your hobbies and talents for inspiration. Fundraising events do not need to be huge events to be successful. It is really important that you choose something you are comfortable doing. Do you like to cook, bake, golf, run or read? Are you talented at making crafts, coffee, babysitting or cutting hair? All of these hobbies and talents can be turned into fundraisers. All of these events raise money for much needed research but they also provide an opportunity to raise awareness and educate others close to us about Galactosaemia. As many of you may be aware, last year my husband and I, along with a small group of close friends organised a Trivia Night Fundraiser at a local sporting club and donated the proceeds to the Australian Galactosaemia Support Network. We sold 100 tickets, ran 5 rounds of trivia and auctioned items that had been kindly donated by local community businesses. As a result we raised almost $10,000. Not only was this event a huge success financially, but so many of my friends and family left the fundraising event better educated about my daughter’s condition. Fundraising is so important for so many reasons! First, it can reach people that may otherwise be out of reach. Often a fundraising event attracts more than your own circle of friends and family. It can draw people in who may not necessarily want to support the goal but are interested in attending a certain type of event. Secondly, a single person can only offer so much in terms of time and resources. A fundraiser brings people with their own resources and monetary strength to back up the goal, often far more than what a single person would be able to offer. Fundraisers also provide a valuable opportunity to create connections with others. These events often prove to be fantastic networking opportunities, opening doors and helping to make connections with a business or individuals who feel encouraged to support the cause. It can also create a great opportunity for other families with Galactosaemia to connect, reducing feelings of isolation. We had 5 Galactosaemia families attend the Trivia Night Fundraiser last year. It was wonderful to meet some fresh faces and families with children of all different ages. We have all been given a great opportunity to make a difference in this unique community, the Australian Galactosaemia Community! As families affected by this condition, we have the knowledge needed to raise awareness, and the motivation required to make an impact. Let’s be honest... If we don’t take up the challenge to raise funds for research... who will? As we are all too aware, most people have never heard of this rare condition. Be encouraged to have a go! Remember, it does not need to be a HUGE event to be a SUCCESSFUL event. Every dollar counts. Take photos along the way and document your efforts. Imagine the impact it will have on your child or loved one when they see your commitment to the cause! 4

Things you may like to consider before you organise your first fundraiser: 1. Don’t do it all on your own! Talk with your friends and family and ask them if they would like to be involved. Consider inviting others that may be able to contribute different talents and community connections. 2. Give yourself enough time to plan and organise the event! The last thing you want to feel is rushed and under pressure. Give yourself enough time to enjoy the planning and to organise the event at a leisurely pace. Remember to delegate roles and responsibilities to others within your core group. This way you will not feel too overwhelmed or burdened. 3. Don’t be afraid to ask! Use the AGSN letterhead (with permission) and approach local businesses for donations if this is relevant. Items such as food contributions, money, auction item donations, room hire fees etc can all be donated by others, thereby reducing your own personal expenses. You’ll be surprised how easy it is to obtain donations and how freely people are willing to give! We were amazed at the generosity of total strangers when we were organising the Trivia event! We had over 50 items donated ranging from wine bottles and cookbooks to artwork, accommodation and memorabilia. The venue also waived the usual room hire fee ($350) simply because we were holding a charity event! If you have any questions about hosting a fundraising event or would like to talk with someone who has done it before please do not hesitate to contact us at the Australian Galactosaemia Support Network.

2012 Annual Newsletter

Sharing knowledge and experiences
Travelling with Galactosaemia – Things to Consider (by Carly Alleway)
THE FLIGHT: Pack your own food! Do not rely on the airlines to provide appropriate Galactosaemia-friendly meals. Have your doctor write a letter explaining Galactosaemia and the diet restrictions and take it on board with you in case you are questioned. When travelling overseas with our daughter we had all food and liquid restrictions waived. We just called the airline prior to departure to double check what they required from us. I was able to pack a full backpack full of snacks, drinks and meals, which was such a relief when travelling over 12 hours to the USA. WHEN YOU ARRIVE: Consider booking accommodation with a kitchen so you can prepare your own meals. It also pays to be aware of where the nearest supermarket is and make sure you can easily access it from your accommodation. Can you access a supermarket via public transport or will you need to hire a car? You may like to visit www.tripadvisor.com and login to the forums (in the location you are visiting) and ask a few questions. Locals and others that frequent these holiday destinations will be able to provide you with detailed information regarding the most appropriate accommodation options and nearest supermarket locations before you make a booking. EATING OUT: We felt very limited with regard to what we could order whilst eating out on holidays. Some restaurants stocked soy milk, but not always. We mostly ordered dishes like salads (check dressing), Grilled meat/salmon with steamed vegetables (no sauce), Fries (check for dairy as some countries will dip in lactose), and plain pasta dishes served with bacon, mushroom and avocado (cooked in oil not butter). In saying that, our daughter was only one year old at the time and it was our first trip overseas so we were very cautious and still learning! We found it much more relaxing to visit the supermarket as soon as we arrived at our destination to stock up on soy milk, snacks, fruit, bread, cereal etc. We often cooked up our daughter’s dinner meal and took it with us to the restaurant so that we always had a backup when there was nothing she could order! The ‘European Galactosaemia Society’ has prepared some ‘Diet-passports for Galactosaemia’. These diet passports contain the minimum text required to explain the essentials of the Galactosaemic diet whilst you are travelling. It can be a useful resource to take with you, particularly when travelling to a non-english speaking Country. Visit http://www.galactosaemia.com/oldEGS/diet-passport/index.html for more information. I think the KEY TIP when travelling with Galactosaemia is to be PREPARED prior to departure! It is amazing how just doing a little extra research and preparation can relieve a lot of anxiety when travelling. Never leave home without a plan B for meals and you’ll be fine! We look forward to travelling more with our daughter and showing her that living with a different diet does not mean you are restricted!

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2012 Annual Newsletter

Galactosaemia Community Events
The AGSN loves to hear about the Galactosaemia community coming together and supporting each other. It is a great way to learn about Galactosaemia at different stages of life and to get great tips of dairy free food options, schooling and specialist recommendations. If you are There are regular catchups currently happening in Queensland and South Australia. and get to know some other families living with Galactosameia? It’s the one time you wont have to worry about what food will be on the table, you or your child will be able to eat it all!!! in a different state, why not start up a catch up

QLD CATCH UP
The Queensland catch ups are organised by Carly Alleway (our QLD based AGSN Trustee and Representative). You can find lots of great ideas for food, organisation and teaching techniques on Carly’s facebook page. http://www.facebook.com/pages/Gal actosaemia-Support-GroupQLD/192389257451140. Please like this page so you can keep up to date on any future catch ups and connect with other parents and people living with Galactosaemia.

SA CATCH UPS
The South Australian Galactosaemia catch ups are arranged by Anna Craven. Please like her Galactosemics of Australia page on Facebook to keep up to date on information of the next catch up. The page is also full of very useful information and suggestions from Anna and other people and parents living with Galactosaemia. https://www.facebook.com/groups/20323901683/ gf
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2012 Annual Newsletter

TRAVEL GRANTS TO THE 2014 GALACTOSEMIA FOUNDATION CONFERENCE
The AGSN believes the Galactosemia Foundation conference is such a great experience for families and individuals. It gives you an excellent opportunity to make friends and gain knowledge of Galactosaemia. This is why we have decided to do what we can to help Australian families living with Galactosaemia attend the next US conference.

FUNDRAISE YOUR WAY TO THE CONFERENCE IN ORLANDO!!!
Here are some ideas to start you thinking about how you can fundraise your way to Florida. • • • • • • • • • • • • • • • • • Fun Run Dinner Party/Cocktail Evening Cinema/Movie Night Bake/Homemade Market Stall/Lemonade Stand Garage Sale Charity golf day Backyard party (You supply food and guest bring donation) Sausage sizzle Car wash Trivia night Games night Partner with your local sports team and sell seats to a game Costume party Video-game-a-thon Fashion show Silent auction or Raffle Casual Friday

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FUNDRAISING GRANT

The money an individual or family donates to the AGSN from 28th Feb 2013 to 28th Feb 2014 will be matched by the AGSN for travel expenses (flights/accommodation) to attend the 2014 conference.

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FINANCIAL HARDSHIP GRANT

The AGSN will consider applications from individuals and families who would like to attend the conference but are financially challenged. The applicant will need to meet the required criteria and show they have contributed to the Galactosaemia community in some way, either by supporting other families or individuals, fundraising for Galactosaemia or building awareness of the condition.
Keep your eye on our website for further details in the coming months

The 2014 Galactosemia Foundation Conference will be held in July 2014 in Orlando, Florida (home of Disneyworld!), so there is plenty of time to plan your fundraising. At present the AGSN holds fundraising authorities in South Australia, Queensland and New South Wales. If you are located in another State or Territory and would like to fundraise please let us know and we will help you arrange the required approvals.

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2012 Annual Newsletter

Research Update
The AGSN is working closely with Dr David Coman and his team at the University of Queensland and our fundraising efforts will help to make sure Dr Coman and his team are able to continue their research. Dr Coman’s team have an advanced plan for their next research program which involves the use of tractography and fMRI to identify neural pathways in people with Galactosaemia. It is hoped that a better understanding of how the brain can be affected by Galactosaemia will help with early diagnosis and earlier intervention for children at risk of learning and speech delays. We look forward to formally announcing this program soon. There will also be opportunities for many families to get involved and to participate in the research and we hope everyone will support this program once it is announced and rolled out. Those of you who attended the Redlands Quiz Night will have heard first hand from Dr Coman about this exciting research and his passion for helping those living with Galactosaemia.

Donations
We very much appreciate your donations! Donations to our Bank Account: Account name: Australian Galactosaemia Support Network BSB number: 082 604 Account number: 11 699 9557 Donations by Cheque or Money Order Cheques or money orders should be made payable to the “Australian Galactosaemia Support Network” and should be posted to: Australian Galactosaemia Support Network 13 Orange Grove Kensington Park SA 5068
Receipts Whether donating via our bank account or by cheque or money order please contact us at agsn@agsn.org.au to request a receipt. We note that under Australian tax law a receipt is not required for donors to claim a tax deduction. However, to ensure your records are accurate we recommend that you contact us for a receipt.
The AGSN has been established as a charitable trust and is formally recognised as a health promotion charity and deductible gift recipient by the Australian Tax Office. This means that all donations made to the AGSN over $2 are fully tax deductible.

Thank you from the Trustees
The AGSN Trustees thank everyone that has supported the AGSN in its first year. We are also delighted to have welcomed Carly Alleway and Michelle Bishop as Trustees since we first started. If there is anyone else interested in getting involved or becoming a Trustee please get in touch with us at agsn@agsn.org.au
CONTACT US: WEBPAGE – www.agsn.org.au EMAIL – agsn@agsn.org.au FACEBOOK PAGE – https://www.facebook.com/pages/Australian-Galactosaemia-SupportNetwork/160829270687695

AUSTRALIAN GALACTOSAEMIA SUPPORT NETWORK