AGSN 2012 Annual Newsletter

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Welcome to the AGSNs first Annual

Newsletter. We have a number of excitingfundraising 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.

2012 Annual Newsletter

The AGSN hopes everyone issupporting Rare Disease Day.

We would love to hear howyou supported the day.

One rare disease standing alonehas a huge challenge ahead, butstanding together we can make

a difference!

RAREDISEASE DAY

2013


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RARE DISEASE DAYFUNCTION 2012

29 February 2012 @The Wine Centre inAdelaide 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 whatGalactosaemia is and how

it affects patients. We

were also very privileged

to hear from Anna

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

person and provides great support for others

living with Galactosaemia. Anna, thank you

very much from everyone that was at this event!


The AGSN is run byvolunteers and all the money

raised goes straight to helpingpeople and families with

Galactosaemia.Would you like to help? We

would love to hear fromanyone that would like to

support the AGSN. Have youever wanted to have a go at

event planning? Can you helpus improve our website or thelayout of this newsletter? Do

you have some great recipes ortips you would like us to addto our site? Or generally just

want to get involved?

PLEASE CONTACT [email protected] or find us

on facebook

Support

Needed !!


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GALACTOSEMIAFOUNDATION

CONFERENCE IN DALLASThe conference was held from the 19th to 21st of July 2012 atthe Hyatt Regency Dallas Fort Worth. Approximately 450

delegates attended the conference.

Attending the conference in Dallascertainly opened our eyes to anumber of aspects ofGalactosaemia of which we werenot previously aware and theconference 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 thegeneral session of the conference. Chris spoke of the successand challenges that the AGSN has experienced to date andgave the conference a general overview of howGalactosaemia is treated in Australia.

During the conference there were a number of opportunitiesto talk with other families and hear their stories of livingwith Galactoasemia. We found this to be an amazingexperience, to be sitting with so many other families thathave had similar experiences when previously you may havefelt alone. For parents with young children you gain aninsight to what your childs future may hold and learn tips tohelp your child have a successful education and socialexperiences.

Another great aspect of the conference was the chance tostock 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 Galactosaemiafriends! We hope to see many more Australian families atthe conference in 2014.

We are privileged to be able to share the information we obtained at the

conference via the AGSNs 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 NewsletterFUNDRAISING by Carly Alleway

re you an to organ ze an event that w ll

raise funds for Galactosaemia research but STUMPED for ideas?Are you feeling uncertain about what type of event you couldchoose? Most of us would ideally love to organise an event that isenjoyable and effective at raising funds yet not too overwhelmingto co-ordinate! Many who have organised a fundraiser in the pastwill tell you the same thing, START WITH SOMETHINGTHAT YOU LOVE. Think about your hobbies and talents forinspiration. Fundraising events do not need to be huge events to

be successful. It is really important that you choose somethingyou are comfortable doing. Do you like to cook, bake, golf, run orread? Are you talented at making crafts, coffee, babysitting orcutting hair? All of these hobbies and talents can be turned intofundraisers.

ll o these events ra se money or much nee e research but they

also provide an opportunity to raise awareness and educate othersclose to us about Galactosaemia. As many of you may be aware,last year my husband and I, along with a small group of closefriends organised a Trivia Night Fundraiser at a local sportingclub and donated the proceeds to the Australian GalactosaemiaSupport Network. We sold 100 tickets, ran 5 rounds of trivia andauctioned items that had been kindly donated by local community

businesses. As a result we raised almost $10,000. Not only wasthis event a huge success financially, but so many of my friendsand family left the fundraising event better educated about mydaughters condition.

un ra s ng s so mportant or so many reasons rst, t canreach people that may otherwise be out of reach. Often afundraising event attracts more than your own circle of friends

and family. It can draw people in who may not necessarily wantto support the goal but are interested in attending a certain type ofevent. Secondly, a single person can only offer so much in termsof time and resources. A fundraiser brings people with their ownresources and monetary strength to back up the goal, often farmore than what a single person would be able to offer.Fundraisers also provide a valuable opportunity to createconnections with others. These events often prove to be fantasticnetworking opportunities, opening doors and helping to makeconnections with a business or individuals who feel encouraged tosupport the cause. It can also create a great opportunity for otherfamilies with Galactosaemia to connect, reducing feelings ofisolation. We had 5 Galactosaemia families attend the TriviaNight 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 differencein this unique community, the Australian GalactosaemiaCommunity! As families affected by this condition, we have theknowledge needed to raise awareness, and the motivationrequired to make an impact. Lets be honest... If we dont take upthe challenge to raise funds for research... who will? As we are alltoo aware, most people have never heard of this rare condition.Be encouraged to have a go! Remember, it does not need to be aHUGE event to be a SUCCESSFUL event. Every dollar counts.Take photos along the way and document your efforts. Imaginethe impact it will have on your child or loved one when they seeyour commitment to the cause!

Things you may like to consider before youorganise your first fundraiser:

1.Dont do it all on your own! Talk with yourfriends and family and ask them if they wouldlike to be involved. Consider inviting othersthat may be able to contribute different talentsand community connections.

2.Give yourself enough time to plan andorganise the event! The last thing you want to

feel is rushed and under pressure. Giveyourself enough time to enjoy the planningand to organise the event at a leisurely pace.Remember to delegate roles andresponsibilities to others within your coregroup. This way you will not feel toooverwhelmed or burdened.

3.Dont be afraid to ask! Use the AGSNletterhead (with permission) and approachlocal businesses for donations if this isrelevant. Items such as food contributions,

money, auction item donations, room hire feesetc can all be donated by others, therebyreducing your own personal expenses. Youllbe surprised how easy it is to obtain donationsand how freely people are willing to give! Wewere amazed at the generosity of totalstrangers when we were organising the Triviaevent! We had over 50 items donated rangingfrom wine bottles and cookbooks to artwork,accommodation and memorabilia. The venuealso 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.


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Travelling with Galactosaemia Things to Consider (by Carly Alleway)

THE FLIGHT: Pack your own food! Do not rely on the airlines to provide appropriateGalactosaemia-friendly meals. Have your doctor write a letter explaining Galactosaemia and thediet restrictions and take it on board with you in case you are questioned. When travelling overseaswith our daughter we had all food and liquid restrictions waived. We just called the airline prior todeparture to double check what they required from us. I was able to pack a full backpack full ofsnacks, 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 yourown meals. It also pays to be aware of where the nearest supermarket is and make sure you caneasily access it from your accommodation. Can you access a supermarket via public transport orwill you need to hire a car? You may like to visit www.tripadvisor.com and login to the forums (inthe location you are visiting) and ask a few questions. Locals and others that frequent these holidaydestinations will be able to provide you with detailed information regarding the most appropriateaccommodation 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 onholidays. 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 assome countries will dip in lactose), and plain pasta dishes served with bacon, mushroom andavocado (cooked in oil not butter). In saying that, our daughter was only one year old at the timeand it was our first trip overseas so we were very cautious and still learning! We found it much morerelaxing 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 daughters dinner meal and took it with usto 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 theGalactosaemic diet whilst you are travelling. It can be a useful resource to take with you,

particularly when travelling to a non-english speaking Country. Visithttp://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! Itis amazing how just doing a little extra research and preparation can relieve a lot of anxiety whentravelling. Never leave home without a plan B for meals and youll be fine! We look forward totravelling more with our daughter and showing her that living with a different diet does not meanyou are restricted!

Sharing knowledge and experiences


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gf

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.There are regular catchups currently happening

in Queensland and South Australia. If you are

in a different state, why not start up a catch up

and get to know some other

families living with

Galactosameia? Its 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!!!

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 Carlys facebook page.

http://www.facebook.com/pages/Gal

actosaemia-Support-Group-

QLD/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 UPSThe 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/


GalactosaemiaCommunity Events


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FUNDRAISEYOUR WAY

TO

THE CONFERENCE

IN ORLANDO!!!

Here are some ideas to start you thinking abouthow 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

The 2014 Galactosemia Foundation Conference

will be held in July 2014 in Orlando, Florida(home of Disneyworld!), so there is plenty oftime 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 andwould like to fundraise please let us know and we will

help you arrange the required approvals.

TRAVEL GRANTS TOTHE 2014GALACTOSEMIA

FOUNDATIONCONFERENCE

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.

FUNDRAISING GRANT

The money an individual or familydonates to the AGSN from 28th Feb2013 to 28th Feb 2014 will be

matched by the AGSN for travelexpenses (flights/accommodation)to attend the 2014 conference.

1.

2. FINANCIAL HARDSHIP GRANTThe AGSN will considerapplications from individuals andfamilies who would like to attendthe conference but are financiallychallenged. The applicant will need

to meet the required criteria andshow they have contributed to theGalactosaemia community insomeway, either by supporting otherfamilies or individuals, fundraisingfor Galactosaemia or buildingawareness of the condition.


Keep your eye on our website for further details in the coming months


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Thank you from the TrusteesThe AGSN Trustees thank everyone that has supported the AGSN in itsfirst year. We are also delighted to have welcomed Carly Alleway andMichelle Bishop as Trustees since we first started. If there is anyone else

interested in getting involved or becoming a Trustee please get in touchwith us at [email protected]


The AGSN is working closely with Dr DavidComan and his team at the University ofQueensland and our fundraising efforts will helpto make sure Dr Coman and his team are able tocontinue their research.

Dr Comans team have an advanced plan fortheir next research program which involves theuse of tractography and fMRI to identify neuralpathways in people with Galactosaemia. It is

hoped that a better understanding of how thebrain can be affected by Galactosaemia will helpwith early diagnosis and earlier intervention forchildren at risk of learning and speech delays.We look forward to formally announcing thisprogram soon. There will also be opportunitiesfor many families to get involved and toparticipate in the research and we hope everyonewill support this program once it is announcedand rolled out.

Those of you who attended the Redlands QuizNight will have heard first hand from Dr Comanabout this exciting research and his passion forhelping those living with Galactosaemia.

Research Update

AUSTRALIAN GALACTOSAEMIA SUPPORT NETWORK

CONTACT US:WEBPAGE www.agsn.org.auEMAIL [email protected] PAGE https://www.facebook.com/pages/Australian-Galactosaemia-Support-Network/160829270687695

We very much appreciate your donations!

Donations to our Bank Account:

Account name: Australian GalactosaemiaSupport NetworkBSB number: 082 604Account number: 11 699 9557

Donations by Cheque or Money Order

Cheques or money orders should be madepayable to the Australian GalactosaemiaSupport Network and should be posted to:Australian Galactosaemia Support Network13 Orange Grove Kensington Park SA 5068

Receipts

Whether donating via our bank account or by chequeor money order please contact us at [email protected] request a receipt. We note that under Australian taxlaw a receipt is not required for donors to claim a taxdeduction. However, to ensure your records are

accurate we recommend that you contact us for areceipt.

The AGSN has been established as a charitable trust and is formallyrecognised as a health promotion charity and deductible gift recipientby the Australian Tax Office. This means that all donations made tothe AGSN over $2 are fully tax deductible.

Donations

Documents

AGSN 2012 Annual Newsletter