We have reached more than 1000 followers on facebook! With that we would like to thank each and every one of you in the Huntington family. Thank you for spreading awareness, knowledge and joy. Thank you for participating at meetings and for sharing your opinion with us. Thank you for using your voice.
Here are a few clips from everything we have experienced together over the last couple of years.
We hope you will be in Bucharest, 4-6 October 2019.
A documentary about Huntington’s Disease
Absolute Beginners is a creative documentary about living with Huntington’s Disease. It is presented by the French Huntington association Dingdingdong and directed by Fabrizio Terranova.
In it, six people talk about the onset of the disease and how they are absolute beginners – and at the same time experts. As the disease evolve they have to find new ways to reinvent themselves. They share how they cope with the disease and how they gain empowerment.
The movie will be released in December or January at dingdingdong.org.
How to start your own Support Group
It can be of great help to talk to others who are in the same situation as you. That’s exactly what Alice Rivières and her friend thought a few years ago, when they established a support group for for Huntington’s disease gene carriers.
Over the last years they’ve went from two to 35 members. Now they meet once or twice a month to talk about Huntington’s disease and everything related to it.
How to cope with Huntington’s Disease
Listen to Mathias Falk’s honest testimony on how it is to live as a gene carrier.
– I said to my friends: “When I get the symptoms, kill me” and they said “Okay, we can do that”. But now I’ve told them: “Don’t”.
Thank you for sharing your story, Mathias.
HD on the Bike
Toughest cyclists ever
With the help of team leader Jeroen de Schepper, the European Huntington Association biked in Belgium with their own team: HD on the Bike.
Around 40 people had travelled to Liège from seven different countries. A group of nine people had driven 16 hours from Poland, another group came all the way from California. Together they biked a distance corresponding to going from Copenhagen all the way to Casablanca in Morocco, and cycled an altitude equivalent to climbing Mount Everest five times. For one cause: tear down the stigmas surrounding Huntington’s disease.
“I am going to keep smiling”
Irina is diagnosed with Huntington’s Disease.
The lack of information worried her but now she’s more optimistic. She encourage people to embrace the positive things in their lives – and to join the Huntington family. Find your local association.
A new coalition to give families a impactful voice
The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) is a new global coalition.
Their aim is to give families who are affected by Huntington disease (HD) a direct and impactful voice in HD clinical research. Read more.
The first weekend in February was historical: it was the first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE). They learned about research and met one of the largest pharmaceutical companies in the world. Read more.
The day Pope Francis met Huntington’s Disease
The 18th of May people gathered in the Vatican. It was an event unlike any other: the largest global gathering of the Huntington’s Disease community. Twenty-six countries sat side by side: from New Zealand to Norway, from Brazil to Poland. Why? To meet one man: Pope Francis. And to tell the world that Huntington’s disease should be Hidden No More.
Read more about the event here
From Russia to Rome
with Yulia Tsvetkova
During the Audience with Pope Francis the 18th of May, the European Huntington Association met Yulia Tsvetkova in Rome. We talked about Huntington’s disease (HD), the event and the situation in Russia today.
performed by Kim
Kim is in his 30’s. He grew up with his mother who suffered from Huntington’s disease (HD). In 2008 he was diagnosed with the same disease. Kim struggled with depression, anxiety and a negative outlook on the future. Listen to Kim’s touching song to his daughter.
Read more about Kim’s story and music therapy here
Note: Kim’s song to his daughter is published with approval from Kim and his family.
with Alice Rivieres
Alice Rivières is French. She is well-spoken, optimistic – and she has a family history with Huntington’s disease (HD).
Alices’ mother got sick 20 years ago. Ten years later she decided to get tested. It felt like a part of her just needed to know. And she was “sure not to have it, so…” Unfortunately Alices’ test results came back positive – which in case of HD is the answer you don’t want. She had the disease.
Read more about Alice’s story here.
For english subtitles: press the “CC” button in the lower right corner.
Living with Huntington’s Disease
with Tove & Angela
How is it really to live with Huntington’s Disease?
Angela is 25 years old. She got diagnosed in the summer of 2016, but started to get sick in her early twenties. Among many other things, her movements make dressing herself into a time-consuming task. Despite all this, Angela still has hope.
Tove Berg learned that she had HD when she was around 60 years old. It came as a shock as nobody in her family had the disease. Before getting the disease Tove worked as a professor. She is now at a day-care facility a few days a week where Tove is running writing courses for patients and staff. Her story is a strong testimony of how a life with the disease is still worthwhile.
Living in a Huntington’s Disease family
with Anne Lennon Bird
Anne Lennon Bird got married to a man who turned out to be a carrier of Huntington’s disease. Donald was diagnosed when their three children was around 9, 11 and 13 years. By that time he had already been sick for many years.
Now Anne is on the board of the Huntington’s Disease Association of Ireland. She’s also a mother living in a Huntington’s disease (HD) family. How is it to live in a HD family – to be a wife and a mother? Hear Anne’s story in the interview.