until there’s a cure there’s care for south australians with motor neurone disease SPRING 2016

In this edition

Fundraising & Events

City-Bay Every August Until a Cure, Host a Morning Tea for MND Donate for a Donut Just Frank & the Metro Bakery Blackwood Uniting Church

Research

Thomas Motor Neurone Project written by Geoff Thomas

People

Your MND SA team Executive Director Karen Percival

MND Advisors Jerry Packer Pamela Bartlett

Administration Carol Armstrong

Marketing & Fundraising Bianka Feo

Jethro’s Festival of Colour Interview with Brad Ebert

Committee of Management

Annual General Meeting (AGM)

Stephen Warren

Tuesday 25 October is the MND SA Annual General Meeting (AGM) and we want you to be there. Come and meet the staff and Commitee of Managment. Also, special guest Dr Vinod Aiyappan, Respiratory and Sleep Physician, will discuss his study, Breathe MND. The study discusses abnormal breathing patterns in people with MND and assesses the usefulness of respiratory support devices in patients who develop respiratory failure. Please join us for drinks and nibbles after the AGM.

Chairman Secretary

Dr Peter Allcroft

Treasurer Sharon Perkins

Members

Sabrina De Rosa Geoff Thomas Address 302 South Road Hilton SA 5033 PO Box 2087 Hilton Plaza SA 5033 P: 08 8234 8448 F: 8152 0447 E: [email protected] mndsa.org.au

MND SA need volunteers to assist in various areas MND SA are re-invigorating our volunteer program and offering a range of new ways for people with different skills to assist for as little or long as they like! Administration/Communications support If you would like to develop your resume or you are retired with admin experience, volunteer to help us in our offices. Duties will include but are not limited to reception, answering phones and coordinating events. We also need volunteers with skills in social media marketing and graphic design as well as grant finding and writing. Event support Encourage family, friends, and work colleagues to join you and volunteer for an upcoming MND SA event. Please see our Upcoming Events calendar or email Carol, [email protected], for more information. Community support In the coming months we are establishing a Community Visitors program where volunteers can spend time with MND clients to offer companionship and support. If you are interested in this type of volunteering there is some training that must be completed so, firstly, please attend our Volunteer Light Lunch to begin the process. We will be setting a date for the induction of new volunteers shortly, please email or call Carol and express your interest. Thank you!

upcoming events DATE

EVENT

Thursday 13 October

You, me and MND at the Hilton Hotel (Guest 1 speaker from Foot Mechanics Orthotics to discuss podiatry to assist people with MND)

Tuesday 25 October

Annual General Meeting (AGM)

2

Friday 11 November

Telethon’s La Dolce Vita

1

Saturday 12 & Sunday 13 November

Stratco Sausage Sizzle (Gepps Cross)

2

Saturday 3 December

Telethon Family Fun Day

2

Thursday 15 December

You, me and MND + Christmas Lunch at Adelaide 5 Sailing Club

Thursday 19 January 2017 You, me and MND at the Hilton Hotel

WE NEED YOUR HELP!

VOLUNTEERS NEEDED

1

We are searching everywhere for generous businesses to donate items or experiences for two large events coming up. Can you assist us sourcing prizes for Telethon’s ‘La Dolce Vita’ or ‘Walk to D’Feet MND’? Please email [email protected] or call Bianka to offer your assistance.

christmas lunch save the date MND SA are in the process of organising a Christmas lunch on Thursday December 15 at Adelaide Sailing Club. 9 Barcoo Road West Beach. We will host a You, Me and MND session from 11am followed by a buffet lunch. This is an opportunity for our community to celebrate Christmas and we would love to see you there. – MORE DETAILS TO COME

Telethon Movie Cards Missing out would be a Titanic mistake! It’s simple. Spend $20 on a TelethonSA Movie Card and receive $120 worth of value at Wallis Cinemas! Discounted tickets, snack offers and the chance to win a Wallis Gold Pass. A fantastic purchase for movie lovers and families. Call us on 8234 8448 to secure yours and support MND SA.

Irene Retraction In our June newsletter we featured a story about the wonderful Irene O’Shea who, for her 100th birthday raised funds for MND SA and parachute jumped from 12,000 feet! We printed that Bendigo Bank donated to Irene’s cause however it was Beyond Bank who sponsored Irene, apologies for our mistake.

$20 puppy love We are excited to announce that due to popular opinion we have a new range of MND SA puppies on the way! Expect new colours this November.

MND puppies are great stocking fillers for children. $7 for one, $12 for a pair and $15 for three. Call us now.

WAY TO GO LOUISE!

MND SA supporter Louise Tye has raised an astounding $4,105 with her City-Bay fun run. Louise’s incredible efforts have put her in the top 3 Fundraisers for City-Bay. This is quite the achievement seeing that thousands of South Australians fundraise for their favourite charity! Well done Louise!

city-bay for mnd sa We had a fantastic time at City-Bay with over 50 people participating for MND SA. Our stall at Wigley Reserve hosted a sausage sizzle, MND SA donuts and professional neck massages for our participants. Thank you to all who fundraised and wore our t-shirts on the day. City-Bay is an iconic South Australian event and a great way to raise awareness of our cause. Everything featured in our stall at the City-Bay village was kindly donated. Our marquee was supplied by Audiopod, food and drinks from Norwood Foodland and of course Vili’s donuts. It is with our generous sponsors support that we can offer goodies at no cost to the organisation. Finally, long-time supporter Kelli Field, owner of Vili’s Blair Athol spoke about MND SA in an article for the Sunday Mail. This type of media attention is vital for MND SA and we are so grateful.

(left) Thank you for the mention in the Sunday Mail Kelli!

Every August Until a Cure, Host a Morning Tea for MND Our August campaign was a huge success with over 5,000 Vili’s MND SA donuts sold raising vital funds for client services. Thank you to all who hosted morning teas, purchased donuts, and spread the word for MND SA. This fundraiser would not be possible without the hard work of Vili’s Family Bakery who delivered countless orders during August. We are very lucky to have Vili’s as a sponsor because they whole heartedly back our cause. From collection boxes in Vili’s Vans and Cafes to purchasing t-shirts for MND SA and promoting us on social media. The Vili’s team go beyond for MND SA.

we can’t thank you enough! For fundraisers big and small, for morning teas and other fundraising events, we couldn’t offer client services to locals without YOU! Athelstone Friendship Group Australian Taxation Office Auto Tranz Diff Parts Bank SA Aberfoyle Park Bank SA Fulham Bank SA Glenelg Bank SA Marion Bank SA Reynella Bank SA Torrensville Bank SA Woodside Bendigo Bank - West Beach Community Branch Big W Colonnades Brentnalls CBB Cowell Clark CPR Services CSR Bradford Digital Embassy (middle) Electranet EMA Legal Epic Energy Foodland Henley Square Foodland Munno Para Foodland Norwood Foodland Sefton Plaza Fyfe

Gate Gourmet Hickinbotham Group Inner Southern Homelessness Service Lands Titles Office Laura Ciccozzi Marsh Insurance Medical Indemnity Group Australia (MIGA) My Budget Piper Aldermann Planning Forward Port Adelaide Football Club Price Waterhouse Coopers Prince Alfred College Pro Hart Gallery Broken Hill Return to Work SA Reynella Family Care Rite Price Heating & Cooling (top right)

Riverdale Primary School R M Williams SM Cabinets Sophie Coombes Teacher’s Registration Board Tyndale School (bottom right) VERO Willalooka Tavern

donate for a d nut On August 2 the 70 Franklin Street community of over a dozen businesses hosted ‘Donate for a Donut’ in the foyer of the building. Thanks to Jodi Mastrangelo (pictured right) of Marsh Insurance and companies such as Piper Aldermann and PwC who got behind our cause raising further funds for MND SA by asking people to donate for a donut raising over $3,000 for South Australians with MND. MND SA Ambassador and Port Adelaide AFL footballer Brad Ebert attended the event bringing with him fellow players Matt Lobbe and Tom Jonas. Brad was interviewed on Triple M’s Roo and Ditts morning show about ‘Every August Until a Cure’ to raise awareness of MND SA because we need people outside of our MND community to support our cause. The players served donuts and mingled with volunteers from 70 Franklin Street who sold MND SA merchandise, handed out flyers and collected donations. ‘Donate for a Donut’ is a fantastic example of one person inspiring a community to take action. Jodi coordinated the entire building to support MND SA and achieved an incredible fundraising result. You can do the same. If you have a fundraising idea, think about who you can involve to make the event as large as possible. That way MND SA are really raising awareness in the wider South Australian community. Following this event and through Jodis support, Vero and LTO hosted a second morning tea raising more funds and promoting awareness further.

Thank you to everyone involved in ‘Donate for a Donut’. It was such a brilliant way to kick off a month of morning teas for MND. If you have any questions about hosting a fundraising event, call Bianka, Marketing and Communications Officer, at MND SA and she will assist you with ideas and advice. Alternatively, you can email Bianka on [email protected]

Just Frank and the Metro Bakery Thank you to Just Frank and the Metro Bakery in Mount Gambier for baking vegan treats during August to raise funds and awareness. The blue themed sweets were beautifully crafted and did NOT contain any animal derived products. MND SA are really pleased to see that our community are so creative and generous! All proceeds for Just Frank’s treats were kindly donated to MND SA.

Blackwood Uniting Church Morning Tea Geoff and Mary Thomas with the help of Blackwood Uniting Church hosted a Morning Tea and information session that raised over $1,700. The Blackwood Uniting Church used their various skills to create the items for this special event. Homemade treats and toys were raffled and MND Advisor, Pamela Bartlett and our Executive Director, Karen Percival, spoke with guests about MND and our client services. Both MND Advisors, Pamela and Jerry, are available to present information to people of all ages about MND. These information sessions allow people to learn about MND in simple language. Geoff hosted another event during August that raised a further $950. What a legend. If you would like to schedule an information session, please call our office on 8234 8448 or email Carol at [email protected]

research

Thomas Motor Neurone Project Mary and Geoff Thomas are very actively involved in advocating for MND and want to contribute to the wellbeing of MND patients, their carers and friends. Mary has MND and Geoff is her carer so this is a cause close to their hearts. They found that current research efforts are largely directed to projects that are laboratory type research e.g. gene identification and stem cell treatments. While these projects have their place Geoff and Mary wanted to make a difference at ground level in terms of clinical approaches and day to day management based on the challenges of coping with the ongoing stresses and the unpredictability of the disease process. Quite simply they wanted to find some ways to support the well-being of people with MND, their carers, families, friends and health care professionals (HCP). The study commenced with a systematic review of the current literature on MND management by Dr Melanie Harris of Flinders University. This showed that there had been a lot of work on patient perceptions and needs, some on the issues facing carers, but very little on the issues and roles of families, friends and even HCP’s in the day to day management of MND.

research

Thomas Motor Neurone Project The literature clearly highlights that the management of any condition that is life limiting requires not just physical support but mental and emotional support to maintain a sense of self, value and purpose. People with MND (and their carers) must be actively supported mentally and emotionally during the progression of the disease – we refer to this as their wellbeing. Wellbeing is a key component for managing the disease progression and forms the basis of this project. This support role could be filled by a number of people such as carers, family, friends and social networks, and health care professionals etc, however: • Carer is often overburdened • Family support varies depending the family relationships, on their acceptance of the condition, and their own life commitments. • Friends and social networks often struggle with how best to provide support without appearing to intrude on the privacy of the patient or carer. • In the case of health care professionals, the ability to do this role is dependent on the individual HCP experience and skill. Most GP’s for example would have little experience with the condition. It is agreed that well-being is individually driven with patients and caregivers as managers of their lives, conditions, treatment decisions, communication preferences and needs. The Repatriation General Hospital has developed a focus of clinical care and expertise for MND utilising the existing specialties which contribute to best care of this unique patient cohort The clinic has now developed into a MND multidisciplinary team. It is essential that such services be maintained once the Repat is closed and Geoff and Mary have been strong advocates for this. The purpose is to build on this service in ways which will make it more effective for all concerned. What is needed is a process to allow patients and carers to manage their care across these multiple services. To provide this the project is developing and trialling a management template which reflects patient preferences, key likes and dislikes, key current issues, goal setting and planning and action plans so that unnecessary questioning is avoided, and reflects the decision making between patient/carer and relevant health professionals, and is responsive to change. Management is based on shared information between the various people, with the patient/carer as the main driver. The following quote from Denis Witley is very true for people with MND: “There are two primary choices in life: to accept the conditions as they exist or accept the responsibility for changing them.” This encapsulates the energy and the tenacity of Mary and Geoff to not just accept the system as it is, but to strive for a better journey for those that follow them. They are personally funding the project but with the generous contributions from their friends and others who believe that we can do better. Written by Geoff Thomas

What’s Brad Ebert been up to… Aside from battling through various head injuries during the AFL football season, Brad Ebert continues to be a loyal supporter and Ambassador at MND SA. Brad is committed to spreading the word about the importance of MND SA in South Australia, discussing our efforts on radio and at events. We are so pleased that Brad will continue to advocate for MND SA in 2017.

interview with Brad For those that don’t know, explain your connection to MND SA? My connection to MND is that my grandma passed away from the disease in April this year. Seeing what she went through over the few years since she was diagnosed and the slow progression of the disease “…” what it did to not only her but the rest of the family. I felt like I wanted to help out MND SA since she was a client. The family were very grateful for what MND SA did for them in a really difficult time, so I wanted to be able to help in any way I can. What is the thing you enjoy most about being MND SA’s ambassador? I think it’s just being an advocate for people with MND and that I can make someone’s day by sending them a message or having a chat. When you are intervewed for MND SA, what are the key messages that you like to get across? People can’t always donate money so spreading the word is really important. Telling other people about MND and MND SA helps raise awareness. I always make sure I explain that MND SA are the state association that help people here, that the government does not fund you. “…” Cure for MND are doing amazing work and I fully support them but it’s important that South Australians recognise that MND SA are separate. MND SA really work with the people that are suffering from MND, that awareness is so important. If you weren’t an AFL footballer, what would you be? That is a tough one. I’m doing my degree in Human Movement at the moment but if not, best case scenario, I would say professional surfer. I can surf but I’m not that good. So, cruising around the world surfing would be a good life. What is the hardest thing you’ve done in your life? Moving away from home at seventeen when I first got drafted. I thought I was ready for it but I had just finished school and moving away from friends and family was harder to adjust too than I expected. I left Adelaide and was drafted to West Coast so I went to Perth and lived there for four years. When are you your happiest? The best times are when I’m hanging out with my wife Bec and the family. Family and mates, doesn’t get much better than that What message would you like to send to the MND SA community? From a family point of view. Do your best to keep positive in a shocking situation. Seeing my grandma go downhill so quickly was awful and I understand what families are going through, in a sense, but that’s one thing. Also, enjoy the time that you have, try not to dwell on it and get caught up in the diagnosis. It’s important to enjoy the time you have so you can take that away from the situation. That’s hard to say because I know it’s hard to do but that’s the best advice I can give.

Major fundraiser! Tickets for sale! Get ready for a night out like no other. Telethon’s La Dolce Vita will feature specially selected fine wine, gondola cruises on the Torrens and a delicious Italian-inspired menu.

Join us Friday 11 November at the scenic Riverside Cafe, War Memorial Dr, North Adelaide, 6:30-9:30pm. Life really is beautiful at this unique event where you will sample fine wine, take a leisurely gondola ride, enjoy gourmet cocktail food and watch the sunset over our magnificent city. La Dolce Vita, hosted by radio personality Kym Dillon, will feature a luxury auction in which MND SA will showcase 8 prizes with all proceeds coming straight to the association. The event is an opportunity to indulge for a good cause. Why not celebrate the Christmas season with work friends as this wonderful event.

TICKETS are $125 per person, and include fine wine, cocktail food, and a chance to win a Clare Valley get-away for two, valued at $960. BOOKINGS can be made at telethon.com.au or by calling (08) 7231 1699.

Don’t forget to mention that you heard about the event through MND SA!

jethro’s festival of colour On 30th August MND SA client Jethro Adams was showered with love by friends and family at ‘The Festival of Colour’, an event created in his honour. The sun was shining and Aldinga Arts Eco-Village was alive with music, decorations, food stalls and stand-up comedy. The event allowed Jethro to celebrate and he even got up from his wheel chair and danced! Jethro and Claudia are a young couple in their early forties with a 9-year-old daughter whose lives have been changed significantly by Motor Neurone Disease. Jethro was diagnosed in early 2015 whilst they were all living and working in India. Despite many obvious physical changes Jethro continues to work with his one functioning finger helping on a project for a Buddhist community on Kangaroo Island. Both he and Claudia have been involved with the Buddhist community there volunteering their time at working bees and utilising Jethro’s electrical wisdom to power up the stupa and teaching space. Claudia and Jethro are very active in their community and continue to lead busy lives. They live a very social life and work hard to help people feel comfortable with the changes in Jethro as he loses his ability to speak and move. This has been important in the way their daughter Finley understands and accepts the changes in her Dad. Keeping their house open to all the children in the neighbourhood and school friends has meant that the changes in Jethro have been normalised, explained and therefore accepted. It is this openness that has allowed people to be a part of their journey and not separate from it. Jethro and Claudia have undertaken a number of courses in preparation for death. They feel it is very important to be both open about it and prepared. Both love a good cup of tea and time spent outdoors in nature. They are active vegetable growers with Claudia being the brawn and Jethro being the brain behind their current very full veggie patch! Basically they are normal people living with MND, they don’t feel very different despite all the changes happening physically to Jethro. They realise that from the outside it looks like a very hard situation to live with but forget that most of their time because they are too busy getting on with life! Written by Claudia Peoples

A word about our sponsors MND SA are proud to be supported by three iconic Adelaide businesses.

As well as being an integral part of our August campaign, Vili’s kindly donated $1000 for MND SA to purchase a run of t-shirts for volunteers and events. This enables us to give these t-shirts at no cost to supporters running events for the organisation. Vili’s also donated 600 cocktail donuts for MND SA events during August. Stratco continue to organise quarterly sausage sizzles at Gepps Cross and St Marys. These sausage sizzles are set up by Stratco with all expenses paid for so all we need are willing volunteers to host on the day. On average these sausage sizzles raise $1000 so this certainly impacts our annual fundraising. Norwood Foodland continue to assist MND SA with free grocery items for events. This means more fundraising dollars go toward client services. No request is too big, we call manager Con with a wishlist and he delivers!

don’t despair, there’s still time. Thanks to the overwhelming success of Every August Until a Cure, Host a Morning Tea for MND, Vili’s will continue to offer MND SA donuts with blue icing until the end of the year. Tell your family, friends and colleagues to get behind this delicious fundraiser and order now! Call 8234 8448 or email [email protected] Qty Price 100 $225 200 $400 300 $570 Orders will be delivered in Adelaide metro area.

can you help?

D O N A T E All funds donated remain in South Australia. We need prize items, services or experiences for MND SA to use in raffles or auctions.

SPONSOR

Can we partner with your business?

VOLUNTEER We need volunteers for events, fundraising, office support and community visits.

CONNECT Can you connect us to a person or business who you think can help MND SA?

SUPPORT SOUTH AUSTRALIANS WITH

MOTOR NEURONE DISEASE mndsa.org.au

8234 8448

facebook.com/mndasa/

Don’t forget... If you haven’t already, please renew your MND SA financial membership. This will allow you to vote at our Annual General Meeting and keep you informed of research and upcoming events in the South Australian MND community. RSVP for our Annual General Meeting, Tuesday 25 October.

RSVP for You, Me & MND by emailing [email protected] If you would like an MND Advisor to present an information session at your workplace, school or community group please email [email protected] Save the date for our MND SA Christmas Lunch, Thursday December 15th at the Adelaide Sailing Club. Help us by volunteering at one of our many upcoming events. Call us for more information.

Would you like to gain or use office skills with the lovely staff at MND SA?

Leave a legacy A world without Motor Neurone Disease could be the legacy you leave behind to your loved ones. When you leave a bequest or donation to MND SA in your Will, you directly impact client support services and research into the cause and cure of MND. Often people who choose to include MND SA in their Will have lost a loved one or battled MND themselves. We are always grateful and humbled by those who wish to leave a legacy to MND SA no matter the size or amount they are able to give. We rely on the power of individuals giving together to assist us to take care of the South Australian community affected by MND. If you would like to learn more about leaving a bequest to MND SA call 8234 8448. Thank you for supporting MND SA. It is because of YOU that we are able to offer the best possible support services to the South Australian community with MND. If you need us, we are a phone call away, Monday through Thursday 9am-4:30pm.

Membership renewal Form PERSONAL DETAILS Name Address

Postcode

Phone Email I am a client with Motor Neurone Disease (no charge) I am a general member that supports MND SA ($20 annually) I would also like to donate a further $ (donations over $2 are tax deductable)

to MND SA client services.

PAYMENT TYPE CASH CHEQUE

VISA MASTERCARD

MONEY ORDER

Name on card Card number

/

/

/

Expiry date I would like to donate

once only

monthly

six monthly

Signature: Please complete this form and return via post to PO Box 2087 Hilton Plaza SA 5033. Thank you!

POSTAGE PAID AUSTRALIA

MND SA Newsletter Print Post Approved 10000 3157 If undeliverable please return to

Motor Neurone Disease Association of SA Po Box 2087 Hilton Plaza 5033 P: 08 8234 8448 E: [email protected] mndsa.org.au