Table of contents
Our moments together
HD on the Bike: a race for awareness
HD-COPE: the Patient Coalition
First national meeting in Spain
ERN-RND Meeting: improve care in Europe
EHA Business Meeting
EHDN Plenary Meeting
Audience with Pope Francis
Living with Huntington’s Disease:
Mara, Alice and Matt –Predictive Testing
Mathias – Coping with the disease
Alice – Start your own support group
Tove & Angela – Being diagnosed with Huntington’s
Irina – “I am going to keep smiling”
Astri & Svein – More than a disease
Anne – Living in a Huntington family
Alice – DingDingDong
“Absolute Beginners” – a documentary
“Marianne” – a song
HD on the BIKE
HD on the Bike
The European Huntington Association kicked off awareness month with our new, yearly tradition HD on the Bike.
May 1, we participated with our own team at Škoda Velotour in Frankfurt, Germany. May 18 we gathered in Firenze with the help of Lega Italiana Ricerca Huntington-LIRH onlus!
With the help of team leader Jeroen de Schepper, the European Huntington Association biked in Belgium with our own team: HD on the Bike.
Around 40 people had travelled to Liège from seven different countries. A group of nine people drove 16 hours from Poland, another group came all the way from California. Together we 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 stigma surrounding Huntington’s disease.
A new coalition to give families a impactful voice
The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) was established in 2017.
What is HD-COPE? HD-COPE consists of team members from Huntington families. They work to improve research and trials by giving family-oriented input. 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.
Conferences & Meetings
First national meeting in Spain
In the beginning of February 2020, all of the Spanish Huntington’s disease associations were gathered in Madrid for the first time.
Spain is one of most populated countries in Europe and have 12 Huntington’s disease associations. The meeting was an important first step in establishing collaboration between them and start working together. Read more.
How to improve care in Europe
In January 2020, patient advocates visited the European Reference Network for Rare Neurological Diseases (ERN-RND). During the meeting, they discussed how to provide better care and improve knowledge of rare diseases.
During the meeting, the groups discussed how to work together. Some of the upcoming work is to create Patient Journeys for the various diseases. The patient advocates will also develop promotional material and share news to raise awareness and knowledge. Read more.
European Huntington Association
Meeting in Vienna
The 13th of September, European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70 people participated. Among them were many new faces.
The European Huntington Association hope to see you at our conference in Bucharest next year!
EHDN Plenary Meeting
World’s largest Huntington conference
Every second year in September EHDN hosts one of the world’s largest conferences dedicated solely to Huntington’s disease. The 2018 EHDN plenary meeting took place September 14th – 16th in the Austria Center Vienna. Here’s a video from the inspiring meeting!
*The European Huntington’s Disease Network (EHDN) is a non-profit research network committed to advance research, clinical trials and improve clinical care in Huntington’s Disease
The day Pope Francis met
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.
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, the event and the situation in Russia today.
Living with Huntington’s Disease:
At the European Huntington Association conference in 2019, we held a session on Predictive Testing – Why Test and Why Not? It can be hard to choose whether to have a predictive test or not. Some people decide to undergo testing, others choose not to.
Alicie Riviéres and Matt Ellison have both undergone predictive testing, and both tested positive for Huntington disease. Following the session, we spoke with Mara Andrade which have not yet decided whether to test or not.
Thank you for sharing your story!
How to cope with
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.
How to start your own
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. Learn more.
Being diagnosed with Huntington’s Disease
with Tove & Angela
How is it to live with Huntington’s Disease?
Angela got diagnosed when she was 25, but started to get sick in her early twenties. Among many things, her movements made dressing herself into a time-consuming task. However, Angela still has hope.
Tove Berg learned that she had Huntington 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. In 2016 she was at a day-care facility a few days a week where she was running writing courses for patients and staff. Her story is a strong testimony of how a life with the disease is still worthwhile.
“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.
More than a disease
In this talk during CHDI Therapeutics Conference, our president, Astri Arnesen, and board member, Svein Olaf Olsen, delivered a powerful keynote about Huntington’s.
They talked about marital commitment, denial, genetic testing, and raising a family.
Video: Gene Veritas
Living in a Huntington family
with Anne Lennon Bird
Anne Lennon Bird got married to a man who turned out to be a carrier of the Huntington gene. Donald was diagnosed when their three children was around 9, 11 and 13 years. By that time he had shown symptoms 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.
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 Huntington’s is the answer you don’t want. Read more about Alice’s story here.
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. Watch it here!
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.