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Huntington's Victoria
Australia
Приєднався 5 вер 2016
Huntington's Victoria - A Year in Review 2024
Take a look at the highlights from 2024 as the Huntington's disease community came together for Huntington's Victoria's annual events!
From May Awareness to the Gala Ball and HV's Fun Day, enjoy snapshots of these unforgettable moments and remember a year that was truly remarkable.
From May Awareness to the Gala Ball and HV's Fun Day, enjoy snapshots of these unforgettable moments and remember a year that was truly remarkable.
Переглядів: 39
Відео
Huntington's Australia Community Connect Online Peer Forum Updates
Переглядів 25Місяць тому
In this video, staff from Huntington's Victoria and four community members share their experiences with the Huntington's Community Connect (HCC) online forum. They discuss the challenges and benefits of joining the forum, offering insight into how it has fostered support and connection within the Huntington’s disease community. Get a firsthand look at the positive impact the forum has had, as w...
Huntington's Victoria Discusses Grief with Founders of the Good Mourning Podcast
Переглядів 23Місяць тому
Join Sally & Imogen from "Good Mourning" in this heartfelt conversation about grief, anticipatory grief, and the supports available in Australia for individuals and families navigating these challenges. 💜 This discussion sheds light on coping strategies, the unique aspects of anticipatory grief, and ways to find connection and support. Don't miss the special episode of the Good Mourning podcast...
Huntington's Victoria Annual Gala Ball 2024
Переглядів 1762 місяці тому
✨ Last Saturday, we hosted our 11th Annual Gala Ball, and what an unforgettable night it was! ✨ From inspiring speeches to thrilling auctions and a packed dance floor, every moment was filled with energy, joy, and support for the Huntington’s disease community. We’re so grateful to everyone who joined us - our incredible sponsors, donors, and guests - your commitment made this night possible. C...
The Power of Sharing Your Story - Teddy
Переглядів 993 місяці тому
We are excited to continue our series of community stories, highlighting the power of sharing your experiences. Sharing your story not only empowers you but also helps others feel connected and less alone. Today, we are proud to introduce a new and brave member of our community, Teddy, who is sharing her journey with us for the first time. Join us in welcoming Teddy and discovering the strength...
Beyond the Lab - Episode 4: Cali Roiboit
Переглядів 903 місяці тому
Cali's research focuses on identifying the cognitive skills that are most impactful for the daily lives of people with Huntington's Disease (HD) and their loved ones. Her study also explores whether current cognitive measures accurately capture these skills and how changes in cognition translate to changes in everyday life.
Beyond the Lab: Episode 3 - Demystifying Clinical Trial Participation with Ajantha Rajasekhar
Переглядів 614 місяці тому
We're thrilled to bring you an in-depth interview with Ajantha Rajasekar, a seasoned Clinical Trial Manager, who shares her expertise on the rapidly evolving landscape of clinical trials. Ajantha provides valuable insights into the significant progress made in human research studies, explores the ethical advancements in clinical trials, the importance of informed consent, and initiatives for eq...
May Awareness 2024
Переглядів 86 місяців тому
With heartfelt gratitude, we extend our deepest thanks to everyone who supported and participated in this year's May Awareness campaign for Huntington's disease. Your dedication, enthusiasm, and collaboration have helped us achieve remarkable milestones in raising awareness and fostering unity. We look forward to continuing this journey with you toward a brighter future.
The Power of Sharing Your Story - Bek and Keith
Переглядів 1357 місяців тому
Join Bek and her father Keith as they share their inspiring journey from initially knowing little about Huntington's disease to becoming passionate advocates. Discover how their story has empowered others and brought hope to those navigating their own paths with Huntington's disease.
Episdoe 2: Beyond the Lab with Ji-Shen Loong - Living well with Huntington's Disease
Переглядів 1657 місяців тому
Join us on for the second episode of "Beyond the Labh" series for an insightful conversation with Ji-Shen Loong, a researcher focused on defining wellbeing in collaboration with the community and Huntington's Victoria. In this discussion, Ji-Shen, a clinical psychologist, explains why we should move away from the traditional approach of assuming what might be good for a group and instead utiliz...
2023 In Memory Honour Roll
Переглядів 599 місяців тому
Remembering the lives of loved ones who have passed away from Huntington's disease. While we may no longer see them, we can still feel their presence in our hearts. They live on in the stories we tell, the lessons they taught us, and the love they left behind. Let us find comfort in knowing that they are at peace.
Go Blue on May 22 - Jaclyn and Cat
Переглядів 539 місяців тому
To celebrate Go Blue on May 22, 2021 we asked two of members of the international HD community to share their stories and experiences of HD. Watch the video to hear Jaclyn (Canada) and Cat (Scotland) talk about HD, its impact and how they find a way through it.
Huntington's Community Connect Peer Forum
Переглядів 219 місяців тому
The Huntington's Community Connect is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed with Huntington’s disease, at risk, gene positive, gene negative, a carer or friend, Huntington’s Disease Australia Community Connect is the space for you. Whatever your location, you can connect with others who have similar exper...
The Power of Sharing Your Story - Sue Bassingthwaighte
Переглядів 1239 місяців тому
We are thrilled to announce that we will be featuring inspiring community stories all year long, aimed at empowering and reassuring you that you're not alone, and your voice matters in this space. A big thank you to the community members who've already reached out to us, eager to share their stories. Here is Sue's perspective of the Power of Sharing Your Story.
Huntington's Victoria Family Fun Day at Luna Park 2022
Переглядів 6510 місяців тому
Huntington's Victoria Family Fun Day at Luna Park 2022
Huntington's Victoria Annual Gala Ball 2023
Переглядів 12710 місяців тому
Huntington's Victoria Annual Gala Ball 2023
Rare Disease Day with Huntington's Victoria and Prof. Anthony Hannan
Переглядів 20210 місяців тому
Rare Disease Day with Huntington's Victoria and Prof. Anthony Hannan
50 years of service to the Huntington's Disease community
Переглядів 2910 місяців тому
50 years of service to the Huntington's Disease community
European Huntington's Disease Network 2022 - Sally & Carolyn Scottish HDA
Переглядів 52Рік тому
European Huntington's Disease Network 2022 - Sally & Carolyn Scottish HDA
European Huntington's Disease Network Meeting 2022 - Jenna & Ash HDYO
Переглядів 71Рік тому
European Huntington's Disease Network Meeting 2022 - Jenna & Ash HDYO
Huntington's Victoria Christmas Message 2022
Переглядів 1252 роки тому
Huntington's Victoria Christmas Message 2022
What is Huntington's disease? - Commonly asked questions and answers
Переглядів 4834 роки тому
What is Huntington's disease? - Commonly asked questions and answers
Which is test to diagnosis of hd
Your children will carry it...
Thank you for your understanding and support. As you may know, each individual's experience with Huntington's disease is unique, and every decision, including the choice to publicly share one's story, is deeply personal. We are grateful to people like you who recognise the tough decisions others face and who foster an environment of support and acceptance. We encourage you to visit our website to learn more about what it means to be gene-negative.
Woody Guthrie is most famous celebrity family eith Huntington s
88 is long life
Hi Teddy, I loved hearing and seeing you tell your story. Sending lots of love to you and your family.
Hi Ali, on behalf of Teddy thank you for taking the time to watch her story and share your support. It is greatly appreciated ☺
Hi Teddy, thankyou for sharing your story, you are a very courageous young woman. ❤❤ its not easy at all , glad you have the support from hd Victoria ❤️
Hi there, thank you for your support and compassion regarding Teddy's story. We know she would be touched that her story has been heard and helpful to others. Thank you again.
But now with Testing it could be better, right?
I am so glad that you have not inherited this horrible disease. Your family look lovely! All the best to each of you. cheers
Thank you for your understanding and support. It is much appreciated by the family and please do not hesitate to reach out if you have any questions huntingtonsvic.org.au/contact/.
My sister in law and her sister both tested negative ,I was so happy my nephews were safe. Sadly both my sister in law and her sister passed away last Sept. both were in their 50’s .
Thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We hope you and your family have the support you need, please reach out to us if you need any further support.
I know this is sad ..and im sorry..but why keep reproducing?
Thank you for reaching out to us. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one, with many personal considerations. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
This disease doesn't skip a generation. If No parent has it you will not get it.
My grandmother had Huntingtons disease. Two of her children had it but thank God my mother did not. Because of this we were all be able to have children without the fear.
Thank you for reaching out and sharing your experiences with HD. We know the family will be touched that their experience has relevance to you. We hope your family is receiving the support they need, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Stops with her...takes a very Brave person to make that happen
Thankyou for sharing this important information about HD.. it sounds like a great idea, I do have some questions ? I will write some down to share when I have given it a little more through. ❤
Thankyou all for sharing your story. ❤ As ive hd and jhd in my family, i appreciate how difficult it is for you all. ❤❤❤❤
Great interview, thanks for sharing
Such an awful disease 😔 I'm sorry for those who have it and or have family/friends who've had or have it.
❤
Thank you for sharing your story. My son is 45 and struggles to be understood as his speech is deteriorating, moods swings are normal and anger increases with frustration. My adult grandchildren have not been tested yet but are thinking about doing so. My son can be loving and kind and those are the days I love. The other days are hard ❤
Thank you for reaching out and sharing your experiences Santena. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum where you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
my daughter's dad has HD its so hard watching him
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/. We also have an online peer forum where you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
Passionate and amazing man .. thanks Tam 💙💙
Fantastic video. Very informative especially about "brain and body connection". Also was surprised to know how little is given to medical research as apposed to military. Thanks Tony and Tammy 💙
Im sorry that it happened to your family.God bless
Thank you for your support on behalf of the family
😢
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When I was 19 I was in hospital for five days having tests and the lady next to me had Huntingdons. She had been adopted and never knew her family history. She married and had two boys. One came to visit the other refused as was so angry at her for having this disease. How could that possibly be her fault. She said had she known she would never have married. She was lovely, talking was hard for her. She was so comforting to me as I was unwell but didn’t know why. This beautiful soul who was dying from the cruelest disease was helping me deal with my illness.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. Living with a disease or illness in the family is never easy, and each person deals with it differently. It's great to hear that a HD community member was able to make an impact on your life, we are sure that your compassion towards her also went further then you know. We also hope that you were able to recover from your illness, please know that you are more than welcome to contact us at anytime for a chat 🙂
Such a selfish family. The girls knew they could pass it on and still had kids.
Thank you for reaching out and sharing your experiences. We know the family will be touched that their experience has relevance to you. We are sure that you understand that living with the impacts of HD is quite complex and any decision is a difficult one. If you need any assistance, please do not hesitate to reach out to us directly at huntingtonsvic.org.au/contact/.
Do the girls have huntingtons?
Bless you all 🙏
I have a question, even though she does not have HD, wouldn’t she still have a recessive gene for it? Meaning it could still show up down the line. Does anybody know?
Hi Diana, thank you for your question. The mutated HTT gene that causes symptoms is a dominant gene. This means if you do not inherit the gene from your parent, you will never get HD symptoms nor pass it down generations. Please take a look here to read more huntingtonsvic.org.au/genetics/, hope this helps!
@@huntingtonsvictoria3391 Thank you !
My father and brother died from Huntington's disease, my sister and myself have it too these stories are helpful in not feeling alone. 😊
Hi Peter, thank you on behalf of the family and for sharing your own experiences of the impacts of HD. We would love to invite you to our Huntington's Community Connect forum (huntingtonsaustralia.com.au/). This is your safe space to connect with the HD community, share and read experiences and ask questions that you may have. We are always here to help, please do not hesitate to reach out if you need ☺
My Grandmother, my father had Huntington and have passed away. My sister and I now have it. And my daughter has tested positive.
There is no cure and no way of slowing it down. Not in my lifetime but i hope they find a cure at some point
Thank you for sharing your thoughts and hope for Huntington's Disease families. We are with the HD community each step of the way. HD Buzz is a great way to stay up to date with the latest news on research in the HD space en.hdbuzz.net/. Please do not hesitate to reach out if you have any questions.
It is genetic in my moms side of the family. Im due a test. My moms side of the family are a walking medical disaster. Epilepsy, brain hemorrhages and huntington's disease. How can one family have so much bad luck.
Hi Andrew, thank you for sharing your family's experiences with HD. We truly empathise with the challenges you and your family are facing. HD alone can be very overwhelming, please know that you're not alone in your journey. You may find some comfort in reading through or asking any questions in the Huntington's Community Connect forum huntingtonsaustralia.com.au/. It is your safe space in the HD community. If you need any assistance, feel free to reach out. We are here to help.
Its about dam time they came up with something to help!! My Dad died with HD at 76 my Brother has is really bad. he is 60 and I am 50 now! Lost my niece at 21 in a home! Lost my Dog from a brain tumor. Lost my little cute Guinea Pig that we used to dress up in a little dolls skirt and walk in the parks! Then recently lost my Mom from a severe sepsis infection that spread through her blood stream. Got divorced after 12 years of an mentally and emotionally abusive mirage. I have HD myself...and Type 2 Diabetes, and Nerve and Muscle pain along with bad Arthritis pain every day I move around like I'm 86 and think like an under educated idiot but seem to be smart at all the wrong things that don't really matter. Good luck with your family, and Bless all of you!!
Hope you're doing well, I can't imagine how hard it must be for you. You've lived through more than anyone should have to. God bless you.
This is such a hellish and heartbreaking disease. I pray for an effective treatment and someday even a cure.
Bless you and your family. Don’t understand. You are so brave.
I guess I might think “birth control”…
Wow great to hear some meds helping 👏👏♥️
My uncle xyz passed away of this ... My cousin his daughter x has this debilitating condition... she was such a powerful intelligent excited lady and now I hear that this Huntington's is getting the better of her and it is so sad to she can hardly walk I have heard .. Sadly its congenital and hereditary and my other cousin the brother z , I hear does not have it... I have not spent much time with them Apart from childhood ...my mam was married to my dad the youngest brother.... And all I was told in childhood was my grandad passed away ...when daddy xyz. was only about 5 years old..... His other brother my uncle abc. he is alive and well....about 3 or 4 years older than my daddy... so me I'm 48 and my brother z is ...43.... my dad the youngest told me don't worry he was tested and he's okay borderline?? What does that mean I asked daddy, and he says live life and don't worry you and your brother will be ok !!! But are we...really I think? maybe my daddy never got tested .. or hes in denial and not telling me the whole facts.. my dad said that he was Borderline I have heard and read that their children have a 50% chance of having it and this was the fact with my cousins sister has it and the brother does not. I'm a retired midwife and I'm only 48... I retired due to pain and depression and supposedly I'm diagnosed with lupus and I say this as I have never been tested yet. Huntington's disease but hopefully.. I'm going to get tested .. So I can plan and prepare my self for this condition ... my middle uncle alive and well has 2 daughters about 40 and about 42 ish.. They seem.okay...and stated they don't want to know .. I also had cataracts..as my father did..we both have had implanted lenses and the cataracts taken out along with the lenses...so I have plastic lenses in my eyes..I was 18 when I first had the operation I had one eye done then the other eye done 30 years ago when the operation was done it was amazing I could see so well but I still need to wear varifocals and protect my eyes from sunshine two of my children have cataracts I have 4 adult children... ... and I don't know yet weather my young granddaughter's have cataracts but I do know a few of them wear glasses and I have 6 granddaughter's from 2 year old up to 11 year old... god bless all of you families and people out there who have lost someone to Huntington's disease god bless all of you take care AMEN ...XXXXXX xxx
My mom had this. I am in the gray area, so I may or may not develop symptoms. Hopefully a cure will come soon!
Hi B, thank you for reaching out and letting us know of your personal connection to HD. Please let us know if you'd like to be included in our mailing list so that you can be across what is happening in the HD community and the research space.
Wouldn't it be good to put more energy into finding a cure for HD...if PGD is so expensive people in poor countries will still pass on HD.
Hi Theresa, thank you for your contributions. We are now fortunate due to the efforts of the Payne family in this UA-cam video, that members of the Huntington's community in Australia can apply for funding that enables them to access PGD. Ultimately, we are all focused on supporting researchers to find effective treatments and eventually a cure.
You just did. Thank you for the hug. Luv yer. Thank you. I can't it breaks my heart. Love to all.
Hi Victor, on behalf of the family thank you for your support, it is much appreciated.
This is what you need to know. I know of a family where the daughter and mother were positive. But the daughter had invitro analysis of her embryos and the positive ones were eliminated. She went on to have twins with the non-positive embryos so the family knew that the disease would not be passed on in the next generation in their family. This is wonderful news. BUT, this process is illegal now in many states and thus not available to many people. Fight for reproductive freedom and allow families and their doctors to make the best decisions.
Hi Susan, thank you for sharing a story of the family of a mother and daughter who were living with a positive status. I hope they are both well and please do not hesitate to let them know that we are happy to be of any assistance if they need it, you can find our contact details here huntingtonsvic.org.au/contact/. With respect to reproductive rights, there is now funding assistance in relation to PGD.
HD is just horrific, very happy for her that she doesn't have it, but I can't imagine watching my Mom go through it.
Thank you for your understanding and support on behalf of the family. Please do not hesitate to reach out if you have any questions huntingtonsvic.org.au/contact/. We also have a peer forum that is a safe space for you to connect with others who have similar experiences and share stories with each other, head to this link if you would like to register huntingtonsaustralia.com.au/registration/
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Thank you on behalf of the family for your support
I know a family devastated by this illness. Young married couple had four children. Then the illness was discovered in the husband quite young. He had been adopted and had no medical history. He passed after a horrific experience with it. Then one of the sons as a young man discovered he had it. Then the next son and one of the daughters. One daughter didn’t get it and doesn’t carry the gene. Before one of the sons became symptomatic he had a child. She was raised by the sister and not allowed to be tested until she’s 18. Her mother also passed early for an unknown reason.
As a nurse I have cared for 2 patients with Huntington’s. Broke my heart. We treated symptoms and provide supportive care which is limited except for hands on personal care, feeding, love, socialization, provide safe environment
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A friends husband died of Huntingdon so did his parents but hard to watch because when I first met him when he was well
Thank you for sharing and please do not hesitate to reach out if you or your friend require any assistance from us huntingtonsvic.org.au/contact/. We have an online peer forum that is a gathering for community members directly impacted by Huntington’s disease. Regardless of your status whether you are diagnosed, at risk, gene positive, gene negative, a carer or friend HCC is the space for you. Whatever your location, you can connect with others who have similar experiences and share stories with each other. Please find included the link to the forum huntingtonsaustralia.com.au/
I am so sorry for the loss of your husband, son & your other 6 family members 💔 Bless them all 🤍 You are an incredibly strong woman to have gone through so much. Big hugs to you xx
Thank you for your support on behalf of the family
So very sad. I volunteer at our local hospice, and Huntington’s is the worst disease I see. My heart goes out to all that suffer this horrid disease.
We want to take this opportunity to thank you for your service to those patients in the local hospice. Thank you for your support of this family, it is much appreciated
@@huntingtonsvictoria3391 Thankyou. So heartbreaking for all involved.