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Small Talk on 3CR – A Reflection

admin — Sun, 03 Mar 2013 06:06:10 +0000

In 21 very quick months, Small Talk Radio on 3CR has developed into an efficient and compelling, topical program for short-statured people around the world, thanks to web radio technology. The ability to have this voice, at least in Australia, rivals the impact of the famous Little People, Big World TV show in USA and therefore it is so important to us that we continue to hear your thoughts and suggestions on the show going forward.

The team of Meredith, Graci, Margherita, Sam, Jonathon and I have enjoyed bringing a complete range of topics to air in the last year. They are arguably lead by our most recent show this month which updated our listeners on the fast-moving global trial being conducted by pharmaceutical company, Biomarin, on a drug which could prevent and give cure to common ailments experienced by people with Achondroplasia. It is being tested on children here in Australia by the Murdoch Research Children’s Institute as well as other leading Centres of Genetics overseas. Although, for such a delicate subject of ‘medicating a faulty gene’ (which is essentially the method of the trial), its introduction and explanation via Small Talk removed the potential of over-reaction among our listeners and hosts. We are all grateful that Prof. Ravi Savarirayan, a member of the SSPA Professional Advisory Board as well as being closely involved in the trial, has been able to join us in the studio, take all of our questions and answer them with such clarity. So no matter what our opinions may be of it, I’m so happy that our show can be a forum for ‘the whole truth’. He promises to join us again as the trial advances.

Prior to this, Small Talk has also covered sensitive issues of dwarf entertaining and throwing plus genetic counselling given over the years to both average-sized parents of a short-statured child and short-statured parents, themselves. Likewise, we’ve really appreciated having guests representing each along with Margaret Sahhar, the Senior Genetics Counsellor at MCRI come in and give us their personal and honest stories. Sport also continues to feature regularly, from reports on the Sspitfires Basketball team which is gaining strength in numbers and skill (thanks to World Dwarf Games training) to the success of Australian athletes at the London Paralympics. Indeed the WDG will be a prominent focus between now and the Opening Ceremony this year so we look forward to hearing from a few of the athletes selected onto the Australian Team, on how their preparation is going.

It truly is going to be a bumper 2013 for Small Talk which will require even greater preparation into each show. That is why we are inviting our Melbourne members to express their interest to be a part of our on-air team! This is a wonderful opportunity for those that want to learn something new. We ask that if you are interested in becoming a part of the team that you consider the commitment that you’ll be making before you make your decision. All expressions of interest can be sent through to the Small Talk team via our email smalltalkon3cr@gmail.com. Please leave your contact details and let us know why you want to be a part of the Small Talk team. More information about this opportunity will be sent to all interested parties soon.

Our next radio program will air on Wednesday, March 6th at 6:00pm EDST. You can listen to previous shows by checking out our podcasts via: www.3cr.org.au/smalltalk.

Thank you for all of your support. This is Ollie from Small Talk – over and out!

NDIS: National Disability Insurance Scheme

admin — Sun, 03 Mar 2013 06:02:16 +0000

The draft legislation for a National Disability Insurance Scheme (NDIS) was introduced to Federal Parliament on Thursday 29 November 2012.

This Bill will give people with disability a right to realise their potential, and to make choices and be in control of the decisions that affect their lives.

People with disability, their families and carers have been waiting a long time for this change. This Bill marks another real step forward in making an NDIS a reality.

A reality that will start in less than a year.

The draft legislation sets out a framework for the national scheme – the first stage of which will benefit more than 20,000 people with disability, their families and carers in the Hunter in NSW, the Barwon area of Victoria, South Australia, Tasmania, and the ACT. The legislation will establish the NDIS Launch Transition Agency as an independent body, working with people to identify their goals and aspirations, and providing them with the support they need to help them reach their full potential.

The Agency will also work with service providers and other organisations to make sure people with disability can access the kind of care and support they need to pursue their goals, including supporting carers in their important role.

The Bill to introduce the National Disability Insurance Scheme (NDIS) will be considered closely by the Parliament, people with disability, their families, carers, and advocates, and by the disability sector before being finalised in 2013.

Please take time to read through the legislation overview and the legislation, and to have your say. This is available at: http://www.ndis.gov.au/

2013 Australian World Dwarf Games Squad announced

admin — Sat, 02 Mar 2013 12:28:15 +0000

The World Dwarf Games are rapidly approaching and Team Australia is working extremely hard on the training track, as they are committed to raising the level of competition, integrity and passion at the 2013 World Dwarf Games.

Following the third National camp for the Australian squad held from the 26th-28th January at the Sydney Academy of Sport, Team Australia has been selected. The Australian World Dwarf Games team in alphabetical order: Cullen Adams, Alyssa Biddle, Lynelle Boyd, Rohan Bright, Margherita Coppolino, Ryan Cowlishaw, Steve Devine, Kobie Donovan, Tanya Huebner, Ashleigh Hutchins, Claire Keefer, Samuel Kimberley, Renee Kosch, Samantha Lilly, Brittany Mamula, Robert McKee, Samuel Millard, Dalton Ong, Troy Parker, Robert Paton, Kat Ramos, Taneya Shannon, Michael Spain, Nathan Stewart, Peter Stone, Anna Sydenham, Walter Taylor, Jonathon Tripp, Charli Worgan, Joe Worgan, Meredith Young.

Thanks to everyone for their support up to this point and a special thanks to Marg Daly (head coach), Tom Carney (coach), Leon Lilly (coach), Monica Ferrie (mind coach), Rob Millard (team manager) and Patrick Keane (assistant team manager) for all of their work and commitment to the team up to this point.

We encourage everyone to really get behind Team Australia heading into August. We are heading to the games as a united team capable of achieving something quite special. Your support and encouragement is appreciated by the entire team.

For more information on the World Dwarf Games, visit: www.2013worlddwarfgames.org.

SSPA Professional Advisory Board Chair receives honour

admin — Fri, 01 Mar 2013 07:03:58 +0000

SSPA members recently received the news that Professor David Sillence AM was awarded membership in the Order of Australia in the recent Australia Day Honours List.

His nomination for the award and testimonials came from a number of people in the community support groups, including the SSPA, ConnecTeD Foundation and Osteogenesis Imperfecta Australia.

The award recognizes his significant service to medicine in the field of Clinical Genetics. David has been outstanding in the field, including his dedication to people with short stature, the LPAA and SSPA, for more than 40 years. David has expressed his sincere gratitude for the nomination and support from the SSPA.

Two of us – Oliver & Graci Lynch

admin — Fri, 22 Feb 2013 12:13:30 +0000

Interviews by Carole Lander

US-born Graci Lynch, 30, met her husband Oliver, 33, on the internet. After a long courtship, they married and now live in Melbourne. They both have achondroplasia, a type of dwarfism, and together face the daily challenge of living in a society obsessed with body image.

Graci’s story
Oliver and I met in an internet chat room for short-statured people in 2002. Our first conversation was typed because Skype didn’t exist then and it was about two hours long. I kept thinking, “Is this for real?” We got on well so he came over to the United States to meet me at a convention of the Little People of America association in 2003.

We knew all about each other from the online chatting, phone calls and we’d exchanged photos, but I was incredibly nervous about meeting Oliver in person for the first time. I didn’t have to worry because when we cuddled and shared a laugh, I knew it was meant to be. Oliver is the kind of person that people are drawn to with ease. He’s really kind-natured. He immigrated to Australia from Scotland when he was 16. His mother had recently divorced and she brought him and his brother here to live with relatives.

The girls at his high school in Scotland thought he was cute and funny, but they were nothing more than friends. He’d tried dating average-sized girls in Australia, but that never worked out.

When we got married in 2009, I had a lot to get used to in a new country. Oliver’s done a great job supporting me and introducing me to people. His mum and I shop together and talk on the phone all the time. My own family miss me, but they know we’re happy and we Skype a lot. We’re both active members of the Short Statured People of Australia association. I’ve made a lot of friends through that and some of us started a radio show called Small Talk on [Melbourne community radio station] 3CR. Once a month, Oliver and I get on the microphones with the others to raise awareness about dwarfism.

Oliver works as an admissions officer in a hospital. He’s treated with respect there. After all, when you go to a hospital, you hope that the staff will be helpful no matter what they look like. Sometimes people think he’s a doctor. He told me, “I always find that if I stand straight and walk tall (excuse the pun) people will say, ‘Good morning’ as they pass.”

We like to go to movies together and then analyse the plot and characters. I’ve helped introduce him to the theatre, too – we went to a play at the Arts Centre recently. It was a sequel to one I performed in at college in the States.

We tend to act differently in certain situations. If someone is annoying us – like, taking a photo of us in the street – Oliver never wants to cause trouble, but I go up and tell them to stop. He’s a better observer than me – more sympathetic, too – and good at understanding people. He’s taught me a lot. So we’re a good balance for each other.

Children are definitely on our plan. I come from a big family of average-sized children and I know I’d love my kids whether they were short or tall. There can be complications if two short-statured people with different conditions have children, but Oliver and I both have achondroplasia, so the odds are better.

Oliver’s story
In our internet chats, I thought Graci was very mature. There was an attraction as well, but you can’t be sure when you communicate over the phone and can’t actually be with one another. She told me that she tried dating average-sized guys but it was hard. Of course, I understood. It’s like, “How am I going to be perceived? Am I going to be laughed at?”

It’s not always easy for people with a difference to find someone who can understand, love and appreciate them. Only one child in 20,000 is born with dwarfism and although some have average-sized partners, the main thing is to be with someone who understands the issues that short-statured people face in life.

When we met at the convention in Boston, we found we shared a lot of interests, and we definitely liked each other. It was good to find out who she was as a person. We went to a baseball game and to the movies. Over the next two years, I went back to be with her three times. We still have a lot of fun together now that we’re married.

Graci came to Australia in 2007 for a three-month visit and decided that she’d like to live here with me. I helped her with the application for permanent residency. It took hours and hours of gathering information and photos. She wrote a 25-page essay because she wanted to make sure she could get in. She was accepted in only three-and-a-half months. I think it was because her application was so genuine.

It was hard for Graci to start with. Everything in Australia was new for her – the money, the politics, the way people talk. She got a job as a secretary to a chiropractor. She was worried that he’d be reluctant to hire her because of her short stature. She told him, “All I need is a kick stool and I’ll manage just fine.” He was great and found other ways to accommodate her, like moving things lower around the office.

When you’re short-statured, you have to accept that you’re different. But you’re also perfectly healthy and if you get the balance right, you can give off good vibes and people are more likely to accept you.

Graci has a lot of attributes that I don’t, or are not as well-developed in me. For example, she’s more outspoken than me and if we’re given a raw deal in a shop or restaurant, I would just let it go, but Graci will stand up for our rights.

I play basketball with a short-statured team called the Sspitfires. It’s a mixed team, and Graci enjoys socialising with the women as well as watching the games.

We’d love to have kids, but we’d need to have a house and be more settled. If our children were short-statured, I would know how to help them lead their lives. Geneticists have mapped out the equation. If a couple both have achondroplasia, each carries one normal gene and one faulty gene. If two normal genes go together, the child will be average size, but one faulty gene with the normal gene means it will be short-statured; and when it’s two faulty genes together, that’s a double-dose. We could have a scan at three months to find out if the baby had a double-dose and if it did, then it would be better to abort as the child would die very young. Because we’re planning a trip to the UK and the US soon to visit family, we’re putting off the baby plans for a while.

Link to article: http://www.theage.com.au/lifestyle/two-of-us-20130128-2dfo1.html

(Reprinted from The Age, dated 2nd February 2013)

2012 SSPA Convention report

admin — Mon, 04 Feb 2013 11:38:51 +0000

by Tony Munro
SSPA Correspondent

The 2012 Short Statured People of Australia annual convention returned to Sydney’s northern beaches in early October when approximately 100 members, family and friends converged on the Elanora Convention Centre, in Elanora Heights.

The SSPA’s flagship event was for the first time held in conjunction with the inaugural National Dwarf Awareness Month, to be held annually in October. It is aimed at increasing public knowledge of dwarfism and provide a platform for the accurate dissemination of information about dwarfism and portrayal of dwarves,

With government consent for National Dwarf Awareness Month coming through just before the convention, there was limited time to organise events – the most high profile was a well received segment on the popular television programme, The Project. The segment went into the home of SSPA secretary, Linda Henderson, where Linda and her husband, Pete were interviewed, and daughter Kirrily featured, where they spoke about various aspects of living with dwarfism.

SSPA co-founder & Council Member, Rose Hobbs, was also interviewed during a day at Dee Why Beach, while geneticist Prof. Ravi Savanrayan also dispelled some of the misconceptions of dwarfism during the segment. The day at Dee Why saw rough surf conditions causing the beach to be closed and a day at the beach and planned surf lessons were cancelled.

Although Dee Why was a wipeout, earlier in the week the convention gave visitors to Sydney a taste of its world famous harbour with a cruise to Shark Island. It was in this beautiful setting, for a couple of hours,, a picnic was held, folks eating, drinking (red cordial only I am assured) and lazing, the seriousness of the previous day’s Annual General Meeting increasingly a distant memory. Eventually,our intrepid crew made the return ferry journey and it was off to the tourist mecca of Darling Harbour.

Saturday night was the annual Dinner Dance, where ladies and gents alike were resplendent in their finest. This year’s Dinner Dance was more than a chance for ladies to frock up and gents to put on the proverbial Sunday best – we honoured those deemed to contributed significantly to dwarfism and/or the SSPA.

It was appropriate for the SSPA co-founder and current treasurer, Rose Hobbs, to bestow our current President, Meredith Tripp, with Life Membership of the Association. “Merry”, as she is known to most in the Association, achieved the accolade following numerous accomplishments, particularly on the sporting field, and tireless work for the SSPA, always representing the Association with distinction.

Robbie Paton deservedly joined Merry on the list of recipients of the McHugh-Henderson Award winners, when he was given the award for 2012. Robbie earned the award for “work for the SSPA, commitment to sport and for giving back to many communities through his outstanding fund-raising efforts.”

We now look forward the 2013 late September (dates to be confirmed) when Tasmania will play host to our national gathering. In the meantime, make sure you stay involved with your local State association – there’s usually an event of some sort not far away in most States.

Tasmania to host 2013 Convention

admin — Sat, 05 Jan 2013 11:48:30 +0000

It’s the first time, in a long time, but Tasmania is hosting the 2013 SSPA National Convention.
Some information has been received from the contact person, Sarah Belgre about it, which is included below.
Please contact Sarah if you need further information regarding the Convention. She can be contacted at: sarah_belgre@hotmail.com.

Below is some information on the Convention site and of some of the local tourist attractions.

Convention site:

Woodfield Centre – Dysart, Tas

Dates: 29th September. – 5th October 2013 (still to be confirmed)

http://www.woodfield.net.au/

Woodfield Centre is a Family Recreation and Adventure Park located approximately 30 minutes north of Hobart. Nestled within a sweeping valley of Tasmanian bushlands, this idyllic natural sanctuary provides its visitors with a unique camping experience. You will feel like you are a world away in this safe haven full of wildlife including possums, quolls, wallabies, rabbits, echidnas, bandicoots, birds and frogs. Enjoy the panoramic views of the Tasmanian landscape, take a walk along our bubbling creek or venture further out to the nearby Barren Rock Waterfall.

Activities on site:

Archery, Ropes Course, Go Karts, Water slide, Volleyball, Arts and Crafts, Bushwalking, Flying Fox, Raft building, Initiatives course, Abseiling.

Nearby attractions:

Cadbury Chocolate Factory, Russell Falls, Port Arthur, Bonorong Wildlife Park

Top tourist attractions in Hobart and beyond

Mona – Museum of Old and New Art – I have seen this and it is both strange and fabulous at the same time.
Visit the Freycinet Peninsula and Wineglass Bay – Absolutely gorgeous, truly.
Take a Gordon River cruise from Strahan
Visit Cataract Gorge in Launceston- loved this!
Stroll around Sullivans Cove and Salamanca Markets – Hobart is one of my favourite Tassie spots

Please visit the following website, if you plan to extend your holiday in Tasmania. There’s so much to see and do, it’s worth the visit!
http://www.discovertasmania.com.au/

Drug trial for achondroplasia

admin — Fri, 14 Dec 2012 02:26:16 +0000

Recently, the Murdoch Children’s Research Institute in Melbourne has taken steps to beginning trials of a drug developed by the American pharmaceutical company Biomarin. The trials will be aimed at children with Achondroplasia between the ages of 4-9. The research suggest that the drug may help to reduce some of the complications associated with Achondroplasia; the need for shunts, spinal and hip surgeries etc.

Link to article in ‘The Australian’ newspaper dated 27th November 2012:

http://theaustralian.com.au/news/drug-trial-to-increase-the-height-of-people-with-dwarfism-in-medical-breakthrough/story-e6frg6n6-12265244850

Link to article in ‘The Herald-Sun’ newspaper dated 27th November 2012:

http://www.heraldsun.com.au/news/victoria/drug-trial-to-increase-the-height-of-people-with-dwarfism-in-medical-breakthrough/story-e6frf7kx-1226524485038

Statement in response by the SSPA:

“The SSPA support all of the work done by Professor Ravi Savarirayan and the team at the Murdoch Children’s Research Institute to help improve the quality of life for individuals born with the most common form of dwarfism, Achondroplasia. The new drug trial being implemented by US pharmaceutical company, Biomarin, has the potential to have a positive impact on children living with Achondroplasia by decreasing the prevalence of some of the complications associated with the condition. As the National support group for short statured people and their families, the SSPA want to ensure that families are receiving all the relevant medical, social and emotional support during the trial. We have individuals living with Achondroplasia as well as their parents available to discuss the trial with any families seeking support.”

Vale Dame Elisabeth Murdoch

admin — Tue, 11 Dec 2012 07:18:59 +0000

The Short Statured People of Australia Inc. extends its sincerest condolences to the family and friends of Dame Elisabeth Murdoch AC DBE.

Our members are deeply saddened at the loss of an irreplaceable, gracious woman who has become an exemplary in selflessness. Dame Elisabeth’s unwavering generosity and passion for research with the Murdoch Children’s Research Institute in helping to improve the health of children living within Australia and around the world will be felt for generations to come.

“Together with founding director Professor David Danks (past SSPA Patron), Dame Elisabeth is at the heart of Murdoch Childrens. She had the foresight to recognise the importance of investing in and developing genetic research, even when this field was in its infancy,” said Murdoch Childrens Chairman Mr Leigh Clifford AO.

The SSPA also extends their sincere condolences to the staff of the Royal Children’s Hospital and the Murdoch Children’s Institute who have always been there for our members. Over the years our members across Australia have benefited from the research that has come out of the MCRI into skeletal dysplasias and genetic break throughs, thank you Dame Elisabeth

2012 Albury Sporting Weekend report

admin — Mon, 23 Jul 2012 13:44:05 +0000

There is something about Albury and its’ mere three day holiday weekend that fails to leave attendees, both short and average-sized, feeling enriched but exhausted. I could sum it up for detail by saying ‘see last year’s report’, but that would never be accurate. Every year is slightly different and a core reason why it continues to be so successful in its 17th year.

I am one of the fortunate people to have attended most of these Albury weekends, or ‘Albs’ as it is now known by the younger generation. And that’s just it, still this very day, the kids and teens (and the odd adult) still leave with a heavy heart as their worries get left behind and it’s all about the fun and laughter with their short-statured peers.

The 2012 version attracted members and visitors from all around the Continent –Perth, North Qld,New Zealand– a costly deed to Albury, no doubt! We began on the Friday night which was a restful evening of acquainting at the renowned BBQ pit, and was followed by an early rise for breakfast before it was off to the stadium for Annual State Of Origin basketball match. It was a game that came and went by so quickly – a good thing for the weekend considering the rivalry that’s been built. Butterflies were everywhere as NSW and Victoria played for bragging rights to break the tie at 8 wins each. Defence controlled the game with both teams tentative in attack and rarely finding a player open. Each quarter though,Victoriadid enough to keep just a basket or two ahead until the final quarter, they ran away winners for the 3rd year in a row; the final score 16 pts to 8.

Afterwards it was off to the pub for lunch where the real camaraderie began. The basketball players especially enjoyed a welcome drink. There wasn’t much to unwind with the Boccia and Badminton tournaments beginning in the afternoon. Neither of them were being taken lightly either since it’s just a little over a year till a lucky contingent will be competing at the World Dwarf Games inMichigan. The feathers were literally flying (off the shuttlecocks) from all the determination being shown…I couldn’t tell you how many the competition went through! At the end of the day, the top qualifiers were heading for the finals on Sunday.

Saturday night’s Dinner Dance was another highlight and it began rather interestingly to say the least, with tables lined up around the bend of the Bar. Not the sort the layout conducive to hearty open conversation! Nonetheless, the meals were out timely and could be finished with ample time for burning the dance floor. I’m sure a lot of members would be happy if it were just called ‘The Dance’ anyway! (Of course, plenty of tables and chairs had to be moved in the making of an appropriate sized dance floor). A booking clash last year, saw the return of our favourite Albury DJ – Jono – a popular man for the length of time he was able to keep everyone moving. For the basketballers turned badminton/boccia participants, this hurt though! I know I had to purposely ‘shower’ last the next morning to bathe the legs instead.

A later morning start for the SSPA National Sporting Championship Finals was most welcome and also allowed for every attendee to gather and watch. A rightful condition to attending, the massive crowd were treated to wonderful displays of skill and athleticism courtesy of some being fortunate enough to have played at State and International level. It was a little unfair to the beginners but hopefully inspiration to follow the same paths was in the air for them all. Credit must to the experienced athletes for their respect and explaining rules to others. Amongst them they duelled in the Finals of the two sports, but congratulations regardless to….Boccia: 1st Walter Taylor, 2nd Alyssa Biddle, & 3rd Linda Henderson…..Badminton Doubles: 1st Merry Young & Dalton Ong and Runners Up: Jonathon Tripp & Charli Worgan. Great entertainment, crew!

Casual open soccer and indoor hockey matches in the afternoon wrapped up the sporting component of the weekend that was excellently directed by Tom Carney et al.
There was just enough time to get some more rest back at the Resort and sightseers to return before dusk set in. And for the ladies, time to get ‘glammed’ up again for the BBQ and Auction in the subzero outdoors. Thank you again to Trevor, Leanne, Gail and Marilyn for all the preparation and delivery. The auction and “Gold Coin Toss at the Whisky Bottle” succeeded beyond the average this year, in no small thanks to unknown bidders who were sharing the resort with us for the Morris Minor Muster on the same weekend!

Affirming the end of a wonderful weekend was the sizeable mingling that lasted past midnight around the bonfire. Hence if you’re reading about Albury for the first time or haven’t been for a few years, do yourself a favour and make it a part of your 2013 plans. You never know who you’ll meet!

(As told by Oliver Lynch, SSPA member)