News
FROM THE PRESIDENT
Past President - As I step down from this position I would like to sincerely thank so many people, too many to list, who have supported and encouraged me through their generosity, thoughtfulness and giving of themselves in countless ways. I am confident that the ALDS will move forward with enthusiasm and willingness - ready to do all they can to not only make the ALDS more widely known but also to assist families.
Best wishes and many thanks to you all. Julie Thomas
President - The 2010 AGM on the 21st of March was a significant day in the history of the ALDS. It marked the beginning of a new era for us with the retirement of our founder and past President of eighteen years, Sister Julie Thomas. We are indebted to her for creating and nurturing the organisation that we have today. It has been acknowledged that as we continue to fulfill Julie’s legacy we know that we will have to change some of our structures and the way we try to meet our mission and vision.
We have now moved office to the Multiple Sclerosis Nerve Centre in Blackburn, Melbourne. Contact details are Australian Leukodystrophy Support Group Inc., Nerve Centre, 54 Railway Road, Blackburn Vic 3130, Australia. Telephone 61 3 98452831 Monday to Friday from 10.00am till 4.00pm. 1800 141 400 is still available for outer metropolitan Melbourne callers.
Robyn Loh has been appointed to the position of Office Manager and will be the contact front of shop person for the ALDS. This is a very responsible position and I know Robyn will serve the ALDS Committee and the families we support with compassion and true professionalism.
The ALDS Committee successfully applied for a grant from the Paul Newman’s Own Foundation to employ a Family Advocate to assist families and those affected by Leukodystrophy to navigate and access systems of support. We welcome Pam Joseph to this position and wish her well in the new role.
I’ll take this opportunity to mention that we are very fortunate to be supported by the Photon Group who is kindly assisting us to redevelop our Website. We look forward to seeing the final product. Many thanks go to the Photon Group.
We are indebted to all those who have supported us in the past with fund raising, donations and bequests. Your generosity has been gratefully appreciated and we hope this support will continue to enable us to assist those affected by Leukodystrophy.
Please note, the home office 24/7 support provided by Sister Julie is no longer something that we can offer. We will be doing our best to have systems in place that can provide support and assistance when requested. In the mean time please continue to use the Contact Us quick link to access our contact details.
We will keep you informed of developments as they unfold during this period of transition and change since the recent AGM.
Best wishes for now - Peter Phillips ALDS President
CONGRATULATIONS AND WELL DONE TO JOSH YATES - WINNER WA YOUTH AWARD - Motivate! Woodside Award for commitment to helping others overcome adversity. Please follow the link to read about the awards, Josh and all the other young winners. http://www.childrenandyouth.wa.gov.au/template.asp?CID=530
Read Busselton Dunsborough Times Article
Recently published in the Melbourne Herald Sun is a story from the Burnet Family. Please take a look at the links below to read their full story.
SPECIAL NOTE TO FAMILIES
Please see our Equipment Section under Help Available to see what items of specialised equipment ALDS has available for loan at this time and contact our office if you need any of these items. Please remember that families can contact their State Rep or our Family Advocate if there is a piece of equipment that you need right now but are having difficulty obtaining on your own.
UPCOMING EVENTS
Dennis Turner Plays A Bob Dylan Tribute -
You are invited to attend a very special memorial fundraising concert – ‘Dennis Turner Plays Bob Dylan Tribute’. The concert is being put on in memory of Joshua Quinsey. Josh is the son of our Victorian Representative Deirdre Quinsey. Josh had an Undiagnosed form of Leukodystrophy and was 16 years of age when he died on August 30th last year. The memorial concert will take place on Sunday August 29th. Please consider whether you might be able to join with the Quinsey family and friends on this special day in Hamilton. Please contact myself at the ALDS office or phone the number on the flyer if you would like tickets. Bob Dylan Tribute Concert
Springtime Luncheon -
A Luncheon will be held on Thursday 16th September 2010 at the Caulfield Race Course in Melbourne. Please see the Fundraising section below if you would like to support this event.
ALDS Relocation -
Our relocation has taken place. The new address is 'Nerve Centre', 54 Railway Road, Blackburn Vic 3130, Australia. Telephone Monday to Friday 10.00am till 4.00pm is (03) 98452831 or, 1800141400 for outer metropolitan Melbourne callers. If the phone is unattended please leave a message.
Help Us Help You -
ALDS is happy to endorse the Governments latest efforts to ensure that the needs of people living with a disability will be more effectively taken care of in the future by asking all families and interested parties to make a submission to the Australian Government Productivity Commission Public Enquiry into Disability Care and Support. Please follow the link to the National Disability Insurance Scheme website or the link to the Productivity Commission website where you can find further information. 1st Round Submissions have now closed but the second round submissions can be made and will close in April2011. Click on the link to view the ALDS Submission which has been prepared by our Family Advocate Mrs Pam Joseph.
www.pc.gov.au/projects/inquiry/disability-support
FUNDRAISING
FUNDRAISING LUNCHEON FOR ALDS
Our good friend and supporter Mrs Marie Grafen is organising a fundraising luncheon on behalf of the ALDS. The luncheon will be held on Thursday 16th September at the Elms Function Room, Caulfield Racecourse, Caulfield in Melbourne.
We welcome any members of the ALDS to attend the luncheon along with your friends and family. Please contact our office for further details or to register your interest in attending. RSVP - by Friday 10th September 2010.
ALDS President, Mr Peter Phillips and Family Advocate, Mrs Pam Joseph will provide a presentation along with a talk. More details about the topic of the presentation closer to the date.
Tickets are $30.00 per head for a two course lunch and coffee.
There will be raffles and prizes which we hope all will participate in.
Transport -
There is ample free car parking at the Caulfield Racecourse which is only 20 minutes from Melbourne's city centre, along Dandenong Road or the South Eastern Arterial. The turnoff to the racecourse is clearly signposted.
By public transport - The racecourse is situated only 20 minutes from the city on the Frankston and Dandenong train lines. Trains depart approximately every 10 minutes from Flinders Street station. Patrons need only walk a short distance from Caulfield station. Caulfield Racecourse is also easily reached by tram - the tram stop is within walking distance of the main gate. The No. 3 tram travelling from the city along Swanston Street leaves every 12 minutes from the corner of Flinders and Swanston Streets. The journey takes about 25 minutes. Please alight at Stop No. 52.
ALDS Fundraising GOLF Day
The next ALDS Fundraising Golf Day will be held on Tuesday 12th October 2010 at the Macquarie Links International Golf Club in Sydney. For information view our flyer Golf Day Flyer
Charity Challenge Dinner - 'Spirit of Samoa'
Along with the ALDS Fundraising Golf Day, the organisers are extending their support of our group by including us in the list of recipients of proceeds from the Dinner which, apart from ticket sales includes fundraising from a live and silent auction on the night. If last years event is anything to go by it promises to be a great event . Please take a look at the flyer if you would like tickets to this event which will be held on Saturday 27th November at the Hilton Hotel, George Street, Sydney. Contact Earl Schonberger earls@scored.com.au 0439790151 or our office if you would like further information or to book tickets. 'Spirit of Samoa'
ALDS Promotional DVD Launch
If you would like to purchase a copy of the ALDS Promotional DVD which runs for 25 minutes and has been created to promote the ALDS, aid fundraising and provide information to individuals effected by Leukodystrophy and to the medical community please contact our office on (03)98452831 or email mail@alds.org.au Please see our Acknowledgements page for a list of those people who assisted in the production of this DVD.
Make-A-Wish Foundation of Australia
Make-A-Wish® Australia grants the cherished Wishes of children with life-threatening medical conditions. A Wish creates a world of joy, laughter and smiles. Wishes come in many shapes and sizes; to be a ballerina for a day, to have a cubby house, to meet a favourite celebrity or to go on a family holiday. The magic begins when the child utters the words “I Wish…”
Children and teenagers aged from three up to 18 with a life-threatening medical condition are able to apply for a wish. It is a fun time in which the whole family can take part. Children under the age of three may apply for a ‘Wish Hamper’ package which is a selection of wonderful age appropriate toys.
For further information visit the Make-A-Wish website. Make A Wish Foundation
Book of Stories - 4th Edition
A big thank you to all families who have taken the time to write their story for the 4th Edition of Book of Stories 'Remembering - Those Touched By Leukodystrophy'.
These stories are indeed inspirational and a credit to the love, dedication and commitment of all families living with Leukodystrophy. It has taken a great deal of courage for parents and adult sufferers to put pen to paper and write about their intense, life changing experiences. Overall there is such a strong sense of love and pride to this book that the ALDS is sure all who read it will be inspired.
As with other editions this 4th Edition will be read and appreciated by many. It will be used as a source of fund raising and will be a valuable resource for facilitating greater understanding of the impact of Leukodystrophy on families and especially for those families with a recent diagnosis. If you would like to purchase a copy (or copies) of Remembering - Those Touched By Leukodystrophy please contact our office (03)98452831 or mail@alds.org.au. .
Longest Walk for an Aussie Kid
Our major fundraising event for 2008/2009 came to an end on Tuesday 3rd February 2009 when John arrived home in Geelong and was met by a very pleased and proud crowd of family, friends and well wishers. John was welcomed back into the city by the Mayor John Mitchell and local football legend Billy Brownless. See more details about the days events by scrolling down the Longest Walk for an Aussie Kid sections.
The 'Longest Walk for an Aussie Kid' was a marathon 4,778 km record breaking, West to East, long distance, solo walk across Australia followed by a further 1,783 kilometre fundraising walk from Byron Bay to Geelong undertaken by Mr John Olsen, who is a member of the Geelong Lions Club, to raise funds for two groups John holds particularly close to his heart - the Australian Lions Children's Mobility Foundation (ALCMF) and the Australian Leukodystrophy Support Group (ALDS). His dual intentions are to challenge the existing cross Australia walk record of 115 days and to raise $200,000 for children with cerebral palsy and leukodystrophy.
Total funds raised as at April 2009 is approximately $130,000.
John’s walk was regularly highlighted on Ian McNamara’s ABC radio’s Australia All Over program on Sundays. Thank you to Macca for keeping a close watch on our guy and keeping the public involved and aware of his progress.
We are so proud to have been associated with such a heroic and generous person and we are so glad to now know that John is home safe and well with his family and friends.
Nathan McDowell Hand Cycle Trip from Brisbane to Sydney
ALDS will be assisting Nathan administratively throughout this fundraising and public relations exercise. We encourage anyone who is interested in finding out about Nathan's Hand Cycle Trip to click on the link and consider support this courageous and enthusiastic young man. Nathan McDowell Hand Cycle Trip
Jewelry Sales
We have been very lucky to receive a donation of hand made jewelry from Veronica Seeber whose jewelry is sold in galleries in Western Australia under the name Fragments of a Dream. The jewelry the ALDS has received can be viewed by clicking on the link and you will see that it is sold in boxed sets of pendant and earrings or as a single pendant. Sets are $30, Pendants are $18 and Earrings are $12. If you would like to purchase a superb, individual piece of jewelry please contact our office. View Jewelry
National Approach
The ALDS is continuing its drive to be a truly national organisation. We now have committee representatives in Victoria, Western Australia, South Australia, New South Wales and Queensland. Our intention is to assist all families better by becoming more aware of the services and resources that are available to our families around the country and by creating better communication opportunities and methods.
Awareness
We continue to progress with our aim to increase the public awareness of Leukodystrophy and our group. The Longest Walk for an Aussie Kid has been a wonderful way of getting the word out to the public and the media through press releases, mail outs of sponsorship forms and the wonderful way in which John Olsen has spoken about children with mobility problems as he has met people on his journey. We continue to increase links with Neurologists, Clinical Geneticists and allied Health Service Providers in Australia and internationally. Our promotional DVD will be used by families and friends of the ALDS to support public awareness and fundraising campaigns.
DAYS TO REMEMBER
17th AUGUST - Anniversary of the launching of ALDS in 1992