News
From The President
Please take the time to read about our major fund raising for 2008. I would like to say a very sincere thank you to John and the Geelong Lions Club - Longest Walk Committee for all you are doing to make this possible. I, together with the ALDS Committee wish John a safe and fulfilling five month walk from the west coast to the east coast and then southward to home in Geelong. You will see below how to give financial support to John.
Longest Walk for an Aussie Kid
The 'Longest Walk for an Aussie Kid' is 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 being 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.
18/07/08 John took his first steps eastward commencing at 10 am and by 5 pm had walked 29 kilometers to the Conservation Park entrance where he camped overnight. He is now committed to undertaking the 4,800 kilometer solo walk across the Great Victoria Desert to Coober Pedy and then on to Byron Bay. His progress has been monitored from Geelong as he walked to Hamlyn Bay and then on to the Overland Roadhouse - rain caught up to him as he towed his trailer - affectionately named “Wilson” - along the recently graded muddy surface of the road east toward Meka Station. He then intends to walk across the 100 square kilometer Meka homestead property bound for the bitumen highway and the long walk to Mt Magnet.
Update on John’s Walk - 14/07/08. Today will pass his first milestone – 1000 km since departing Steep Point on June 18. Currently he is on a tarred road heading towards Leinster. He says the country is very dry and very few wild flowers due to the lack of rain in this part of the country.
He was pleased to advise last night when providing his position co-ordinates that he had just finished the second of two steaks delivered to him in the town of Sandstone by the butcher from Mt. Magnet. In the last few days he has covered around the 40-41 km per day. He reported a foot infection had now cleared up.
Total funds raised as at 1st July 2008 is $35,000.
If you would like to contribute to John's fundraising walk please make your donation/cheque to - "Lions Club of Geelong (Longest Walk)" - Commonwealth Bank - Account No. 063-871-1013-4359. This account is located at the Waurn Ponds Shopping Centre - Geelong.
Latest News from Oenone Wood
Oenone finished 3rd overall in the 2008 Tour of Montreal. Judith Arndt won the tour after taking her 4th win in 6 races.
Top 5 Final GC
- Judith Arndt (Ger) Team High Road - 8.48.54
- Suzanne De Goede (Ned) Equipe N?rnberger Versicherung - 0.16
- Oenone Wood (Aus) Team High Road - 0.29
- Brooke Miller (USA) Team TIBCO - 0.35
- Katherine Bates (Aus) Team High Road
Team High Road will be changing it's name as of the 5th of July 2008 to Team Columbia (ie. Columbia Sportswear Company).
National Approach
The ALDS is currently embracing a more national approach to our group by unanimously voting for three interstate representatives to be on the Committee which is now represented by Victoria, South Australia, New South Wales and Queensland. The purpose of this approach is to assist all families better and to make sure that we truly are a national group rather than only Victorian based.
Awareness
We continue to progress with our aim for 2006/2007 which is to increase the public awareness of Leukodystrophy and our group. In 2006 we formed a link with a fund raising foundation set up to assist a NSW family whose two children had been diagnosed with ALD. The group, called the 1314 Foundation provided much needed assistance for this family and the ALDS benefited financially and through media exposure.
We have continued to increase links with Neurologists, Clinical Geneticists and allied Health Service Providers.
Make-A-Wish Foundation of Australia
All Leukodystrophy families are eligible for assistance from the Make-A-Wish Foundation. Make-A-Wish Foundation of Australia is a not for profit charitable organisation that grants wishes to children with life-threatening illnesses. Children up to the age of 4 can receive a Wish Gift Package which is personalised for the child's special needs and interests and siblings are also eligible for a personalised Wish Gift Package. Children between the ages of 4 and 18 are eligible for a full wish which can vary from family holidays, computers, cubby houses, meeting a favourite celebrity, to spending the day as a princess. For further information about Make-A-Wish please click on the link. Members of the ALDS can contact our office if they prefer. Make-A-Wish
Events
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 new stories are indeed inspirational and a credit to the love, dedication and committment 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.
Fundraising
Jewellry 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 $100, Pendants are $55 and Earings are $45. If you would like to purchase a superb, individual piece of jewelry please contact our office. View Jewelry
