newsletter - mnd sa...newsletter february 2016 motor neurone disease association of south australia...

newsletterFebruary 2016

Motor Neurone Disease Association of South Australia (MND SA)

RENEW YOUR MND SA MEMBERSHIP NOW - $20If you haven’t already, please renew your MND SA membership. It’s a great way to keep informed with MND SA upcoming events, annual general meetings and news of note for the South Australian MND community.

All subscriptions and donations assist the Motor Neurone Disease Association of South Australia to provide support services to people with MND. Please keep in mind, current clients need not pay the membership fee.

SAVE THE DATE!Sunday 1 May 2016

REGISTRATIONS OPEN NOW!

10 for 10December 2015 saw MND SA run the 10 for 10 campaign. We needed to raise $10 000 to purchase 10 iPads. The response to this campaign was fantastic and with your support we reached our goal in record time. MND SA purchased the iPads in early January 2016 and our clients are enjoying the benefits. iPads provide a vital communication means for a client who is losing or has lost their speech as a result of MND. Thank you to our many wonderful supporters who donated to the 10 for 10 campaign. You have made such a difference to MND SA and our South Australian clients. This year, with your support, we will continue to upgrade our in-demand communication services.

If you are a client that would benefit from using an iPad communication device, please contact us on 8234 8448 and speak with one of our MND Advisors.

You will find your Walk to D-Feet registration form at the back of this newsletter. Please fill it out and send it to MND SA via email, fax or post. E: [email protected] F: 08 8152 0447 or PO Box 2087 Hilton Plaza SA 5033 Call us if you have any questions 8234 8448

Water Bottles and Walk to D-Feet MND - $15Are you ready for our 2016 Walk to D-Feet MND on Sunday 1 May 2016? This year MND SA will have a filtered drinking water tank available thanks to the generosity of Compass Tanks who are kindly donating the station for the day.

You can bring your own water bottle or even better, purchase a MND SA water bottle! MND SA bottles have our logo on them, cost $15 each and are BPA free. Purchase one at the same time that you register for the Walk to D-Feet MND and they are only $12 each.

This year MND SA want to reduce waste from disposable water bottles and with your help, we can also raise funds for MND SA.

17MAR

7/8MAY

You, Me and MNDClient Information Session at the Hilton Hotel with special guest Nick Carusi of Technical Aid to the Disabled SA(TADSA).

Walk to D-Feet MND at the Adelaide Sailing Club

upcoming events

Motor Neurone Disease Association of South Australia (MND SA) February 2016 newsletter 2

1MAY

Stratco Sausage Sizzle at Gepps CrossIf you would like to vounteer for this event please call 8234 8448


Fading SymphonyHave you seen The Fading Symphony? It’s incredible and not to be missed!Late last year Tim Minchin and the Sydney Symphony Orchestra came together to perform Neil Finn’s ‘Don’t Dream It’s Over’ for MND Australia. The beautiful online video captures the devastating effect that MND has on a person whilst encouraging viewers to hold onto hope that we will find a cure for MND. To watch the video in its entirety, viewers donate $5 and that goes to Australian MND Associations, including MND SA.

Click here and watch it now or visit thefadingsymphony.com!

We would particularly like to thank the following people for their very generous fundraising efforts. It really makes such a difference to MND SA and our ability to provide support and care to South Australians affected by MND!

Happy AnniversaryJudy and Dirk Nieuwenhoven kindly donated $450 to MND SA by asking friends and family to donate in lieu of a gift, for their 50th Wedding anniversary. Thank you and Happy Anniversary Judy and Kirk!

Remember - it works both ways. You can give someone a gift of a donation or you can ask others to make a donation to us, in lieu of a gift. To find out more call 8234 8448 or email [email protected]

Banksia Park International High School Thank you to staff and students who raised over $200 in memory of Eric Schutz.

Port Elliot Primary School A huge thank you to Natarsha Milis and Port Elliot Primary School for hosting a fundraiser that raised over $2,000 for MND SA. What a champion effort for a school of 200 students! Students sold cupcakes and participated in a fun run. The fundraiser was organised for their dear friend and teacher, Mrs Clark and students were excited that she was able to enjoy the festivities.

James KellyOn 22 January 2016, James Kelly and his team cycled from Norwood to Victor Harbor to raise awareness and much-needed funds for MND SA, as a part of the Tour Down Under Community Ride.MND SA are currently providing support to James’s father who is living with MND and he, in turn, wanted to raise money to assist the Association.Forty-two generous supporters raised over $4,000. James, your contribution is greatly appreciated.

We can’t thank you enough...


Story for Toby written by Paul SutcliffeSCHREIER, Trevor Thomas (Toby)When Toby was diagnosed with Motor Neurone Disease he was determined to continue coaching until he could no longer physically do so. The circumstance of his death has led the club and its members to understand the disease. In recognition and willingness to support the Motor Neurone Disease Association of SA the November 2015 South Australian Athletics League (SAAL) Meet at Flinders University and was renamed in Toby’s honour and a collection was made on behalf of the Association.

Toby was a middle distance coach at Flinders Athletics Club, coaching athletes for both amateur (Athletics SA) and professional (SAAL) competition. He had athletes running in various National events, Junior World Championships and University World Games. Toby was very passionate about his coaching methods, and his results speak for themselves. What is especially remarkable about Toby is that he accepted no money for his coaching services, even donating his coach prize money from SAAL wins back to the association. He spent every weekday evening at the Flinders grounds coaching his athletes, and went to almost every competition, be it track and field, cross country, local, State and even National championships, amateur or professional. He was always there for his athletes, quite often 7 days a week.

On top of this, Toby worked full-time managing his own business, and was a family man with a very supportive wife and 2 adult sons. Toby was a stalwart of the South Australian athletics world and the backbone of the Flinders Athletics Club.

Toby’s passion for athletics, his enthusiasm and knowledge of distance running brought him the unparalleled success that he enjoyed over a period of more than three decades. Since starting the Flinders Athletics Club in 1979, Toby shaped and contributed to the lives of so many people. Many of his athletes not only counted Toby as a coach, but since they met him in their teenage years, Toby was among many things, a mentor, and a close friend. It is not uncommon to hear former athletes say that they are the person they are, personally and professionally, in so many ways, due to Toby’s influence upon their life. Toby’s contribution to athletics in South Australia may well be measured by the successes of the athletes he coached, but his contribution to the lives of those he touched will remain immeasurable. Records will be replaced as time ticks by, but Toby’s true legacy will live on through the men, women, boys, and girls who he helped to not only become the best athletes they could be, but also the best people.

As a measure of the respect Toby held in the athletics community his funeral service was held at the Athletics SA Stadium, where over 500 people attended to farewell him.

HonoursFounder and Coach of Flinders Athletic Club for 35 years.Life Member – Mitchell Park Little Athletics, Flinders Athletics Club, SA Athletic League.Inducted into Bay Sheffield Hall of FameAwarded “Club Letters” at Flinders University Sport1988 Coach of year – Sport Australia Awards1988/89 Coach of year – Australian Athletic ConfederationSturt Football Club Player and Coach.

Toby’s memorial chair.


Cornflower Pin - the new classic! - $5We have a number of terrific merchandise items available however this one is a personal favourite. Our logo metal pin is such an important item for supporters to wear because we want people to see this pin and think of us. Our goal is for our pin to be as recognised as the Cancer Council daffodil or the Breast Cancer pink ribbon. With your help, it will be. It’s so important that the South Australian community know about us and understand the important work we do for people living with MND. Please purchase a Cornflower pin and wear it with pride. Seed Season. - $5 The cornflower is the MND Association’s emblem so last Spring we sourced blue ball cornflower seeds and sold them for $5 a packet. These seeds flew out the door. Blue ball cornflowers are easy to grow and make a beautiful living tribute to a loved one lost to MND. If you would like to purchase seeds, either visit our online shop or give us a call.

Visit our online store by clicking here or call into our office to see our full range of merchandise. mndasa.com.au/shop-now

MND Documentary sponsored by Tobin Brothers FuneralsAlthough the number of Australians diagnosed with Motor Neurone Disease (MND) each year is lower than someof the other terminal illnesses, it still remains a devastating physical and emotional experience, both for the person diagnosed and their loved ones and carers.

In this moving Tobin Brothers exclusive documentary, Lisa Morgan, wife of actor Richard Morgan, and former AFL coach and legend, Neale Daniher, talk to Michael Lynch about their confronting experiences with Motor Neurone Disease. Michael also speaks with medical professionals and people who dedicate their lives to researching MND, who assist patients and their families and raise awareness in the hope that there will be better treatments and one day, a cure.

Watch it now, click here or visit tobinbrothers.com.au/blogs/blog-entries/7/Community/93/Motor-Neurone-Disease-Documentary.html

Tanya Xmas lights

Merchandise

Each year Tanya Fielding asks people to make a donation to bask in the beauty of her Christmas lighting display.

This year Tanya chose to support MND SA and was able to raise over $500. Well done Tanya and what a wonderful fundraising idea for the holiday season.

MND SA’s metal pin

Blackwood Rotary Fair

Once again last year the Blackwood Rotary Fair was a wonderful success due to Geoff and Mary Thomas’ impressive efforts. MND Advisors Jerry and Pamela hosted a stall providing information to people about MND and our Association while selling MND SA merchandise.

Throughout the day Mary, who lives with MND and uses an iPad for communication, tirelessly promoted our 10 for 10 campaign, inspiring people to donate for the 10 iPads MND SA so desperately needed. At the end of the day over $4,000 was raised resulting in the purchase of four iPads. MND SA is so grateful and sincerely thanks all involved. It’s events like this that

make such a difference to the MND SA community.


TelethonThank you to everyone who purchased Telethon tickets from MND SA. Special mention to our wonderful staff and volunteers that assisted at the house. Roy, an 81-year-old pensioner from Angle Vale won the first prize of the fully furnished home. Congratulations!

Stratco Sausage SizzleOnce more, thanks to the very generous support of Stratco. Over one weekend in early February 2016, at Stratco St Marys over $1,200 was raised from our Sausage Sizzle!

Thank you to our volunteers and to Shaun and Michael from the Stratco St Marys crew.

Stratco provide everything for the Sausage Sizzles which means MND SA receive 100% of the proceeds. It doesn’t get any better than that and we are privileged to have Stratco as a MND SA sponsor.

Motor Neurone Disease Association of South Australia (MND SA) September 2015 newsletter 7

Kay’s Event, in honour of her beloved sister, Aileen.Peter and Kay Collaton generously hosted an open house event in November that raised over $1,200 for MND SA in memory of Kay’s sister Aileen.

The money raised enabled an iPad to be purchased as part of the 10 for 10 campaign. Thank you! Kay’s fundraising page is still receiving donations click here or visit give.everydayhero.com/au/kay-11

If you would like to host a fundraising event, please contact 8243 8448 or [email protected] and we can support you to bring your idea to life!

Kay

Aileen

The Beer and Beef ClubBeer, beef and assisting a local charity. What’s not to like? Formed in 1992 by a group of business people, and supported since inception by Carlton United Brewers, the aim of the Club is to foster the social aspects of beer and beef consumption. Over 100 people meet each month.

The name summarises the focus of the Club however members also commit to fundraising for a charity each year. We are rapt that this year, the Beer and Beef Club will raise funds for MND SA. In January, Acting Executive Director, Jerry Packer attended the Beer and Beef Club’s January dinner to talk about MND and the Association’s activities with club members and thank them for choosing MND SA as their charity of choice for 2016.

DONATE IN LIEU OF GIFTS - any amount from $10

At MND SA we know that a little can go a long way. Along with other associations throughout Australia and the world, we are working toward a goal of eliminating Motor Neurone Disease. While we are pursuing that objective we continue to provide support and care for South Australians affected by MND.

We understand that sometimes it’s hard to find extra funds to assist MND SA however no donation is too small. Every donation contributes to our community

Ask your friends and family to donate to MND SA in lieu of gifts. Or why not give a gift of a donation to a loved one and we will give you a card for the person outlining who MND SA are and what we do.

Email [email protected] to find out more.


Who’s He? He Rides for MNDChristmas arrived early for MND SA in late 2015 thanks to the extraordinary fundraising efforts of Laura Ciccozzi, Renee Camfferman and Anthony De Corso. These three wonderful individuals organised an event that raised an astounding $20,000 on Saturday 28 November 2015.

The formal dinner held at the Alta Villa Club in Norwood brought together over 100 people in support of MND SA. It was truly impressive! Guests bidded on a silent auction, enjoyed a delicious meal and danced the night away. One thing is for sure, Laura, Renee and Anthony put on a great party for a very important cause.

Laura, Renee and Anthony are in the process of launching a not-for-profit organisation with the name ‘Who’s He? He rides for MND’ with MND SA benefitting from the funds raised.

The fundraising event was so successful we were able to receive coverage in the Eastern Courier.

Please show your support for Who’s He? He rides for MND and ‘like’ them on Facebook by clicking here!

Our community is growing and there is strength in numbers!facebook.com/whosheaustralia/

Place cards at the dinner. Laura Ciccozzi, Anthony De Corso and Renee Camfferman

Laura and Renee operate Black Light Styling and Design and we have them to thank for our fantastic Walk to D-Feet MND logo.

You will agree that our new logo is fun, fresh and exciting. It is sure to gain a lot of attention and that’s what we need because MND SA is still virtually unknown to South Australians outside of our community. Shout it from the roof tops!

The silent auction was a huge success.

Community Visitors Program

MND SA has a new volunteer initiative that we are looking for people to actively participate in it.

The Community Visitors Program is for caring individuals keen to volunteer their time by visiting our clients as many of them are limited in their ability to interact with others or don’t have family available to visit them regularly. Our clients’ wellbeing is significantly enhanced when they are able to socially interact and communicate with others.

The Program involves volunteers visiting clients in their place of residence for an hour at a time, on a fortnightly basis.

Hours are flexible and you will be matched to clients in a location that is suitable to you.For more information about this program please call 8234 8448 or email [email protected]

Making Life a Tad Easier by Ian Beaton Public Relations Officer

Technical Aid to the Disabled SA (TADSA) [Inc]

For people with disabilities and their carers’, it’s not always easy to find the equipment they need to assist with day to day activities. That’s where a unique organisation - Technical Aid to the Disabled SA (TADSA) may be able to help.

TADSA, which is in its 38th year of service in 2016, is a State-wide charity that aims to help clients overcome problems by designing and building or modifying devices where there is no other solution commercially available. The devices built by TADSA’s inventive volunteers improve the quality of life for clients whether they are in care or live independently. TADSA also assists clients to enter or return to work, study, recreation or sport through the equipment it builds.

TADSA provides one-off solutions to one-off problems. People with the same disability or condition might have very different needs in terms of equipment or devices and that’s where TADSA volunteers can help – they will basically invent a unique device to solve a unique problem.

The charity received a 2012 Para Quad SA President’s Community Award for its unique service to the South Australian Disability Community. TADSA is also registered to supply supports for National Disability Insurance Scheme participants.

No referral is necessary to use TADSA services. Clients, carers, disability support workers/organisations and allied health professionals can all contact TADSA direct. If readers or a family member have a problem related to a disability or ageing that they would like help addressing, contact the TADSA office on 08 8261 2922; email [email protected] or visit www.tadsa.org.au.



Your MND team...

Jerry Packer, Acting Executive Director and MND Advisor

Carol Armstrong, Administration Officer

Bianka Feo, Marketing, Communications and Fundraising Officer

Mary Koufalakis, Volunteer Coordinator

Pamela Bartlett, MND Advisor

Jerry Packer, MND Advisor

Introducing MND SA’s AmbassadorFinally, MND SA would like to announce the appointment of Brad Ebert, vice captain of the Port Adelaide Football team, as our ambassador.

The role of an ambassador at MND SA is an important one as Brad is spreading the word about our important work. Not only does Brad promote us on his Facebook and Twitter page but he is assisting us with connections to media and other opportunities not available to us before.

We welcome Brad to our community and are so grateful for his participation and generosity.

Walk to D - Feet MND

Registration Form

MAY 1st 2016 11 am start

West Beach Sailing Club

Early Bird Registration

Closes 1st April 2016

Please send completed registration form to

Email: [email protected]

Post to: MND SA

PO Box 2087

Hilton Plaza SA 5033

On the day registrations

open at 9.30 am

All registrations on the day will be at a

higher rate (an additional $5 per adult and

$3 per child)

Enquiries

Phone: 8234 8448

Email: [email protected]

Please join MND SA for our annual Walk to D-Feet

to raise funds and awareness for MND. The walk is a wheelchair, stroller and dog friendly event over approximately

4 kms. The walk starts and finishes at the West Beach Sailing Club, Barcoo Road

West Beach. To create your own sponsorship page go to :

https://www.everydayhero.com.au/event/w2dmnd2016

Title ________ Name ________________________________________________

Address ___________________________________________________________

Suburb ____________________________________________ Postcode________

Email _____________________________ Mobile _________________________

Team Name (if applicable) __________________________________________________________

Entry Fees Number Total

MND SA Clients FREE ___________ FREE

Adult $30 ___________ ___________

Child $12 ___________ ___________

Merchandise: Water bottle $12 ___________ ___________

Socks (mens/ladies) $ 7

Please accept my tax deductible donation of ___________

*Children under 14 years must be accompanied by an adult TOTAL ___________

T - Shirt required: Please indicate the number of t - shirts required below the size needed:

ADULT CHILD

2XL XL L M S XS 6 4

IMPORTANT

By registering for the Walk to D-Feet MND, you:

Agree that MND SA shall not be held responsible for any loss,

damage or injury arising from the Walk to D-Feet MND

Have physical fitness to safely complete the Walk to D-Feet

MND

Consent to receive medical treatment if deemed advisable

Follow instructions given by event organisers and volunteers

Have sole responsibility for your personal possessions and

equipment

Agree that the entry fee is non refundable

Permit free use of your photograph in print and electronic

media

METHOD OF PAYMENT:

Credit Card Numbers:

Name on card:

CVV: Expiry Date: /

Cheque / money order Please make payable to MND SA

Cash Visa MasterCard

https://www.everydayhero.com.au/event/w2dmnd2016

Motor Neurone Disease Association of South AustraliaPO Box 2087 Hilton Plaza SA 5033

Telephone: (08) 8234 8448Email: [email protected]: mndasa.com.au

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