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                                                 Celebrating RiChARD lY

                                                 I want to talk      of edinburgh.  he liked looking for new challenges and was
                                                 about   someone     determined to complete those challenges no matter what.
                                                 who   meant   so    it was heartbreaking that Richard was taken away from us
                                                 much to me and      in late August of this year, but we are proud of everything
                                                 my   family,  my    he has done.  These were achievements in his life that he
                                                 older    brother    was also proud to have accomplished.  But, on a personal
                                                 Richard Ly.         level, the greatest achievement that Richard made was the
                                                 Richard was the     lasting impression he left on the lives of the people that he
                Richard on his Duke of Ed Adventurous Journey  second  eldest  had met.
                                                 of four children    After losing someone dear, you start to appreciate the
              (three sisters), born on 27 September 1994.  Overall, we   people in your life more.  You notice more clearly how
              enjoyed our childhood together, playing games and making   someone  fits  into  your  story.    Richard  was  here  as  an
              our own worlds of fun.  it was unfortunate that by the age   example for everyone to see that there is always another
              of 13 Richard was diagnosed with Muscular Dystrophy.   way.  he achieved what he set for himself regardless of his
              Richard sometimes questioned himself on why he was     disability.  What you can take away from this story i share
              diagnosed with this disability, but he was always very   with you is that you should not let your condition limit your
              optimistic.  he did not let his condition limit him, and he   performance.  There is always another way.
              always looked for ways to achieve his goals.  he continued   Richard was a blessing to many people, an influence on his
              his education after high school and into TAFE, where he first   friends and overall a kind-hearted person.  So, we celebrate
              studied information Technology and then perused graphic   his life and the milestones that he accomplished through
              Design.  he was highly involved with the local community,   our own personal memories of him.  he is gone, but will
              where he volunteered in the nursery.  Richard also did a   never be forgotten.
              lot of physiotherapy and hydrotherapy, since he knew that
              they were helpful exercises for him to get stronger.  one of   Melissa Ly, Loving sister
              Richard’s greatest achievements was completing the Duke

                   gReAT TURNoUT FoR oUR 2019


                                           AND RESEARCH DAY

                 Thank   you  to   everyone   who   attended  our   Joe, Carolyn and Chris, the Living
                 Neuromuscular Information and Research Day in             the Life I Choose panel
                 August and for your encouraging feedback!  The day
                 was a great success, with over 70 attendees enjoying   •   ‘Home  Automation  &  Home  Modifications  –
                 an interactive information stall, great  networking  investigating options to increase independence’
                 and a jam-packed program full of engaging key note
                 speakers and panels.                               •   ‘Planning  for  the  future  –  experiences  as  a
                 if you couldn’t make it, but would like to catch up on
                 all the latest insights and research on neuromuscular   •  ‘Living the Life I Choose – a panel of people with
                 disorders, all of the talks are available on our YouTube   lived experience of neuromuscular conditions’
                 channel, as well as the MDNSW website  (here’s the
                 direct link:
                 here’s a breakdown of the program:                      “Thank you MDNSW for making our journey easier”
                 •  ‘Taking control of splicing: new therapies for                “Informative and motivating”
                  neuromuscular disorders’                                “[The Seminar] was wonderful, even better than
                 •   ‘Update  on  Facioscapulohumeral    Muscular                         last year”
                   Dystrophy & Myotonic Muscular Dystrophy’
                                                                               “Lots of useful tips on lots of subjects”
                 •   ‘Understanding the Disability Royal Commission’
                                                                          “Worthwhile and good to network.  I got a lot of
                 •   ‘What has been achieved through MDNSW Bequest                      new contacts”

           6 .............Talking Point Summer 2019
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