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An Engaging and Lively Evening with the French-Speaking HD Community
– November 20th 2024
On November 18, the Moving Forward team, together with the Association Huntington France and the Ligue Huntington Francophone Belge, organized a webinar for the French-speaking HD community to share feedback from the EHDN/Enroll-HD 2024 conference and provide updates in lay language about what’s happening in HD research.
96 people from several countries attended the webinar, a number that highlights the community’s strong interest in these topics.
For those who were unable to attend the webinar, you can find the recording here.
Online Session ”One Disease, Multiple Stories”: Personal Journeys Through HD Genetic Testing in Sweden
– November 14th 2024
On November 6, the Moving Forward team together with the Swedish HD Association and the YTAN project hosted Sweden’s first ever HD-focused webinar, entitled “One Disease, Multiple Stories: Personal Journeys Through HD Genetic Testing”.
The event was a great success with 47 registered participants and 33 attendees, including some participants from Norway and Finland.
For some participants it was the first time they attended a HD-focused event, which made the session even more meaningful.
Moving Forward Updates Presented by Maria Linné at the Swedish National HD Meeting
– October 7th 2024
At the end of September, the Swedish HD Association organized its annual national meeting in Gothenburg, attracting over 60 healthcare professionals, researchers, and family members.
Maria Linné presented the Moving Forward project, showcasing the activities done in Sweden. She emphasized key aspects of the project and highlighted initiatives developed in response to needs identified by the Swedish HD community in a survey conducted at the end of 2023.
These efforts aim to provide better education and support for younger generations from HD families, fostering a deeper connection to research and promoting awareness within the community.
The Moving Forward project at the EURORDIS 2024
– June 18th 2024
The Moving Forward team attended the 12 TH European Conference on Rare Diseases and Orphan Products organized by EURORDIS in Brussels some weeks ago.
These were two intense days of learning and sharing, where more than 700 participants gathered (face-to-face and online) to strengthen the voice of
people impacted by rare diseases and discuss concrete measures to provide a better quality of life to all those living with a rare condition.
The conference culminated with a ceremonial signing of a co-created Open Letter to the European Commission, which details the expectations of the rare disease community for the next EU leadership and proposes a European Action Plan for Rare Diseases.
– June 18th 2024
One month ago, the Moving Forward team was invited by the Archaeology Department of the Trinity College Dublin to participate in the workshop “Connecting Threads: Archaeology, Heritage and Community Wellbeing”.
We learned about many interesting projects taking place in Ireland, Italy or Cyprus, involving families with Huntington’s disease, but also other groups, such as people with Alzheimer’s disease, elderly, children or college students.
We left Dublin extremely inspired by the results of this confluence of knowledge fields, with our head loaded with lots of new information about potential new ways to serve the HD community.
– June 18th 2024
Last week, the Moving Forward team organized the second edition of the
popular webinar on research updates for the Nordic countries.
Around 45 people attended the webinar to listen to what is happening in Sweden, Norway and Denmark regarding HD studies and trials.
The Moving Forward team thinks this is a great way to bring the HD community
closer to research, overcome the language and geographical barriers that prevent people from getting proper information and to increase the knowledge of HD families about what’s going on in their country regarding HD
studies and trials.
The Sword of Damocles: Experiences of being at risk of Huntington's disease
– June 11th 2024
The Moving Forward team is organising another online session for the Spanish-speaking HD community to get to know different stories and personal experiences related to Huntington’s disease.
This session will focus on being at risk of Huntington’s disease and it will be held on Wednesday 26th June at 19h (CET).
This session will also focus on the book written by Luis, “Chronicle of a Fortune Foretold”, in which he shares the challenges of growing up in an HD family and living with a backpack full of many different things, including the uncertainties of HD, on his shoulders.
– June 9th 2024
The Norwegian Moving Forward team hosted an online session titled “How can HD families get the right help,” featuring three family members who shared their experiences. The session, attended by 18 participants, was designed for open sharing and was not recorded.
Participants shared their own stories and stressed the need for more information on carer rights and boundaries. The Moving Forward team thanks everyone involved, hoping the session was supportive and informative.
– June 9th 2024
During the Annual Meeting of the Norwegian Huntington Association in Oslo last April, Julie Skarberg, the Moving Forward national coordinator in Norway, presented the project’s achievements and future plans. She conducted a survey to understand the HD community’s needs, which will inform upcoming initiatives, especially online sessions.
Survey responses revealed a strong interest in topics such as HD research, disease progression, testing, consent capacity, public assistance, nutrition, and exercise. The community also emphasized the need for better social support, advocating for more openness, peer interaction, and activity-based groups.
The community called for more advocacy events, psychological help, meeting places, and regular gatherings. Julie expressed gratitude for the support received and looked forward to continued progress with the Moving Forward team.
– June 9th 2024
During the Annual Meeting of the Norwegian Huntington Association in Oslo last April, Julie Skarberg, the Moving Forward national coordinator in Norway, presented the project’s achievements and future plans. She conducted a survey to understand the HD community’s needs, which will inform upcoming initiatives, especially online sessions.
Survey responses revealed a strong interest in topics such as HD research, disease progression, testing, consent capacity, public assistance, nutrition, and exercise. The community also emphasized the need for better social support, advocating for more openness, peer interaction, and activity-based groups.
11th of May, an unforgettable day: The oficial presentation of the book "Crónica de Una Suerte Anunciada" (Chronicle of a Fortune Foretold)
– May 15th 2024
The day was full of surprises and brimming with emotions.
Moving Forward at the Norwegian Huntington Association Annual Meeting in Oslo
– 2nd May 2024
From 12 to 14 April 2024, the Norwegian Huntington Association held a seminar and annual meeting in Oslo, which was attended by around 60 participants.
This was a weekend where the Norwegian Huntington community came together and shared experiences and knowledge.
The Moving Forward team would like to thank everyone for a fantastic weekend, we feel that we couldn’t have had a better community around us and that we are really lucky to be part of this community where we support and help each other in difficult situations.
Moving Forward at the Norwegian Huntington Association Annual Meeting in Oslo
– 2nd May 2024
From 12 to 14 April 2024, the Norwegian Huntington Association held a seminar and annual meeting in Oslo, which was attended by around 60 participants.
This was a weekend where the Norwegian Huntington community came together and shared experiences and knowledge.
The Moving Forward team would like to thank everyone for a fantastic weekend, we feel that we couldn’t have had a better community around us and that we are really lucky to be part of this community where we support and help each other in difficult situations.
– June 9th 2024
During the Annual Meeting of the Norwegian Huntington Association in Oslo last April, Julie Skarberg, the Moving Forward national coordinator in Norway, presented the project’s achievements and future plans. She conducted a survey to understand the HD community’s needs, which will inform upcoming initiatives, especially online sessions.
Survey responses revealed a strong interest in topics such as HD research, disease progression, testing, consent capacity, public assistance, nutrition, and exercise. The community also emphasized the need for better social support, advocating for more openness, peer interaction, and activity-based groups.
11th of May, an unforgettable day: The oficial presentation of the book "Crónica de Una Suerte Anunciada" (Chronicle of a Fortune Foretold)
– May 15th 2024
The day was full of surprises and brimming with emotions.
– May 9th 2024
During the Annual Meeting of the Norwegian Huntington Association in Oslo last April, Julie Skarberg, the Moving Forward national coordinator in Norway, presented the project’s achievements and future plans. She conducted a survey to understand the HD community’s needs, which will inform upcoming initiatives, especially online sessions.
Survey responses revealed a strong interest in topics such as HD research, disease progression, testing, consent capacity, public assistance, nutrition, and exercise. The community also emphasized the need for better social support, advocating for more openness, peer interaction, and activity-based groups.
How can HD families get proper help?: Online Session for the Norwegian HD community
– May 3rd, 2024
The inspiring Chronicle of a Fortune Foretold from Luis Aguilar is now available on book!
– April 24th 2024
PROOF-HD: understanding the preliminary results and balancing our expectations
– June 12th, 2023
Prilenia presented the preliminary topline results of the PROOF-HD clinical trial (PRidopidine Outcome On Function in Huntington Disease) at the end of April. Last year, the Moving Forward team wrote a news piece about this trial.
Now, we look at the first findings of PROOF-HD and share our expectations for the near future. PROOF-HD enrolled 499 participants with early manifest Huntington’s disease (HD) in the U.S., Canada, Austria, Czech Republic, France, Germany, Italy, the Netherlands, Poland, Spain and the United Kingdom.
Enroll-HD: 10 Years Observing HD
– March 15th, 2023
Enroll-HD is the world’s largest observational study being conducted in HD. This study is promoted by the CHDI Foundation, Inc. to speed up the development of effective treatments for Huntington’s Disease. Enroll-HD aims to observe and monitor how HD affects people and how it changes over time. It is focused on collecting a huge amount of demographic, clinical and biological information from the worldwide HD community with three specific goals: enhance the understanding of HD, support clinical trials and improve clinical care.
The inspiring Chronicle of a Fortune Foretold from Luis Aguilar is now available on book!
– April 24th 2024
JOIN-HD: A platform for Juvenile HD
– March 9th, 2023
JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.
Juvenile onset Huntington’s Disease is diagnosed when a 20-year-old person or younger develops unequivocal HD symptoms.