Meet your HCC peer ...
 
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Meet your HCC peer leaders!

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Zani
(@zani)
Posts: 39
Estimable Member Admin
Topic starter
 

One of the main reasons for the HCC forum, is to have a safe space for HD community members to support and encourage each other. A few dedicated and wonderful volunteers from the community are the forum peer leaders and will provide extra guidance and support. You can "meet" them here!

 
Posted : 15/03/2022 11:51 am
Sue B
(@sue-b)
Posts: 46
Member
 

Hi, my name is Sue. I never knew anything about Huntington's disease until I met my friend at a personal development course approx 24 years ago. I have witnessed and learned about this disease from the time my friend went to see a genetic counsellor and tested positive until she passed away a few months ago.

I am honoured to be invited to become a peer support Leader and look forward in sharing my experieces in this forum

 
Posted : 15/03/2022 2:22 pm
pancake
(@pancake)
Posts: 8
Member
 

My name is Peter and I have been aware of HD from before my late mother in law was diagnosed in the early 1990's.

Members of my extended family have died from HD and some are current sufferers.

I look forward to the HCC Peer Leader role to  support the broader HD community.

 
Posted : 15/03/2022 6:47 pm
Katie
(@katie)
Posts: 9
Peer Leader
 

Hello! My name is Katie. I was 15 years old when my mother told me that HD was in our family and she had the gene. At 24, I went through the testing process and am gene positive and not symptomatic. My mother passed away in May 2020, after being unwell for 25 years.

HD can be a tough road, but you don't have to do it alone. Having received a lot of help myself over the years, I want to to support others and share my experiences, with the hope it can make someone else's experience that little bit easier. 

 

 
Posted : 16/03/2022 5:49 am
Sue B reacted
Sally
(@sally)
Posts: 25
Member
 

Hi! My name is Sally, I'm a wife & Mum of 2 girls and a puppy. I like to spend lots of time outside on walks, camping, stand up paddle boarding, eating chocolate and grazing platters!

I come from a HD family, and started my own predictive testing journey a few years ago and was given the news I had inherited the gene from my Mum. 

I've been involved with HV in many ways over the years, some of you may have seen me around! 

I hope that my experiences can be helpful for anyone else in our community.

 
Posted : 16/03/2022 1:51 pm
clob
 clob
(@clob)
Posts: 3
Member
 

Hi my name is Robert, I am old, married and extremely lucky to have two beautiful granddaughters, the older one has just turned 4 and the younger one 4 months. Unfortunatley my son and his 3 girls live on the other side of the world so no hugs and cuddles just hours on the internet talking to them.

I don't have Huntington's but have been involved with Huntington's Victoria for over 10 years advocating for people with Huntington's to create an awarness of what Huntington's is and their needs. I have met with politicians and worked with Tammy Gardner to achieve this as well as doing things such as seminars on stem cell treatments.

I have lived with Multiple Sclerosis for around 30 years and and during this time set up a national MS advocates program for which I was the recipent of a National Disability Award for "Excellence in Advocacy and Rights Promotion Award" in 2013 the same year I received the HV's Advocacy Award. 

In the time I have been involved with HV I have been very impresssed by the way they work and care about the people and their families and hope that I can add something to the work HV does. 

 
Posted : 22/03/2022 2:35 pm
Sue B reacted
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HCC is not a crisis service so if you require immediate support and/or feel in danger or unsafe, we recommend that you please contact 000 or one of the following crisis support services.