Our illustrious president Ron Brownlees with chairperson for today’s club meeting at Cilantro. Neville performed the invocation and Rotary toast. Tony R, Charles R, and Karin S joined the meeting via zoom. Ron welcomed visitors Kevin Egan, and Kevin Siergesma. Ron listed a number of apologies for today’s meeting.
GUEST SPEAKER – Kathy Langley - Huntington’s Disease
Kathy was invited to talk to our club about Huntington’s Disease, a rare genetic and neurological disease that not many people know about. Kathy was born into a family that has Huntington’s Disease in its makeup. Kathy does not have Huntington’s Disease, but her grandmother and her father had it, and Kathy, being one of 5 children, has 3 siblings who have it. For families afflicted with the disease, there is a 50% possibility of inheriting the disease, and there is no cure. The onset of symptoms often do not appear until later in life – adding her father did not display symptoms until his late 30’s. Huntington’s Disease is a cruel disease that can affect mental, physical and emotional capacity and affects sufferers in different ways. Physical symptoms show up as stiff, rapid involuntary movement, loss of balance, poor body coordination, and fatigue. Mental symptoms include personality and mood changes, depression, short term memory loss, and an inability to learn. As the disease progresses, often communication is affected with the inability to speak, that leads to extreme frustration. Kathy described the impact the disease has had on her sibling’s lives with the onset of symptoms, and knowing there is no cure. Early diagnosis is often missed by doctors, many of whom do not receive sufficient training, are not aware of the symptoms and misdiagnose. There are over 2,000 known cases in Australia, however, since there is no cure, and with the stigma of having the disease, the numbers are most likely to be much higher. Many sufferers try to hide the disease to lessen their impact for employment, relationships, and other social aspects that govern our lives. Testing for the disease is available for adults from age 18. A juvenile form of the disease also exists. Once confirmed, the prognosis is poor, with no cure and few facilities to care for people with advanced symptoms - many sufferers are placed in mental institutions. With Kathy’s close exposure to the disease and being able to observe at close hand the resultant impact, she spent time researching the disease – researching other similarly affected families, and professionals dealing with the disease. She has provided her research results including suggestions for improvement to Huntington’s Australia, and Departments of Health with the hope that there is better understanding and communication within the medical field, and better management. She stressed the disease is cruel and impacts the entire family, and her research was conducted for her own family, and other families impacted by the disease. Thank you Kathy for your presentation and enlightening everyone about the symptoms and impacts of what must be a devastating diagnosis for anyone to receive.
For more info: For background, have a look at Kathy's YouTube here. (Ed)
ANNOUNCEMENTS
ARHF – Australian Rotary Health Fund club donation $5,000 – President Ron announced the member’s preferences where to allocate our club’s donation following last week’s club meeting. As the results spread across all three options, they will be taken to the board for further consideration.
District Conference – Warrnambool. Volunteers are being sought for various tasks during the conference.
Rotary Club of South Davao – Pres Ron displayed a Certificate of Appreciation received from the R.C. South Davao acknowledging our club donation and opportunities for cultural exchange.
ROSTERS
The rosters for the market and next week’s meeting were announced.
MEETING CLOSE – President Ron closed the meeting with this week’s theme – Create Hope in in the World.
