3rd MND Connect

Isabella Lambert-Smith from the University of Wollongong reports on highlights from the 3rd MND Connect held at the University of Sydney in November 2017.
Lynda Legradi
November 11 marked the highlight event of the MND calendar; the 3rd MND Connect, a day when people impacted by MND can come together with healthcare professionals and researchers to reach better outcomes for the MND community, now and in the future.
 
Dr Frederik Steyn, who chaired the first session of presentations, voiced the sentiments of all of us who research MND: “we may not have all the answers but we’re a reminder: you’re not alone. There’s a research community who serve you.” And that sums up the most valuable outcomes of this day of connection. 
 
From a researcher’s perspective, one of the most insightful presentations was given by Lynda Legradi (photo). Lynda, diagnosed with MND in 2016, emanated spirit and vibrance as soon as she started speaking. She described her family’s history of MND and shared her own experiences of living with MND, enlightening the audience with the wisdom she has gained. “Dum spiro spero”, “While I breathe, I hope”. Words of strength that we could all do with remembering.
 
Lynda Legradi
Following Lynda’s presentation, the program continued with two sessions that provided delegates with:
  • updates on the latest research discoveries in understanding the causes of MND and the development of potential treatments for MND
  • updates on clinical trials in progress and possible future trials
  • examples of how people with MND can be involved in research
  • an update on research into respiratory management in MND
  • tips on where to go and who to contact for support and multidisciplinary care.
The day concluded with a panel discussion and the opportunity for delegates to ask questions and seek advice about clinical Practice and clinical trials.
 
Adding to the significance of this year’s MND Connect, it coincided with Remembrance Day and the emotional weight of this day of tribute; the poppy and the cornflower together marking the courage and grit of those who fought for their freedom, and those who live with MND. MNDRIA were honoured to present the story of WWII army gunner, Kenneth Elliot Williams (aka “Sport”). 
Sport died from MND in 1987, the same year that the fledgling MNDRIA awarded its first research grant. Sport’s daughter Marlene said of her father that he never gave up the fight, he lived with the gift of hope.
 
And hope is something we can all hold onto. In the words of Carmen Sanchez of the Calvary MND Service, “there is always something that can be done”, multidisciplinary care is available for all who are living with MND now.
 

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