Moving Forward, a project made by the European Huntington Association

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What people say about us

« Fabulous Project » « Very important project. You are doing your job very professionally, supporting and connecting people with HD in Europe, working together with researchers, neurologists, geneticists and other healthcare professionals, sharing information with HD families. »
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« Excellent initiative from the European Huntington Association, with all kinds of information and contents » « I had the pleasure of participating in one of the most spectacular HD events of my life thanks to the European Huntington Association »
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"Moving Forward is a fantastic project by the EHA that provides educational and emotional support to HD families! I am glad that I had the opportunity to be a part of its activities. It is an important step in connecting people affected by HD worldwide, in improving care, and in strengthening the HD community!"
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"I believe this is a unique project that moves science and society forward - towards awareness and a better quality of life for families, towards an understanding of the disease and, therefore, knowledge about the behaviour of people who suffer from HD, towards a better research process. I would like to say a special word about the website of the project - this is a unique place where you can find everything - books related to Huntington's disease, various resources on nutrition and care, clinical guidelines from different countries, video interviews with families. There is no other resource like it in the world."
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"The Moving Forward meeting has been a very positive experience for all of us, which has allowed us not only to strengthen the bond between clinicians, researchers, biobank and the patients and families affected by this disease, but also to share hopes and realities. Thank you very much for your effort and participation".
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"Moving Forward brings us all together, researchers, professionals, family members and patients. It gives us a face and enables us to speak without barriers, without fear, with confidence. The essential ingredient of meetings such as the Moving Forward meeting in Valencia are emotions, and these are undoubtedly provided by the testimonies of patients and their families. It is a privilege to be part of the unconditional HD community".
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All these initiatives are a relief, they are comforting. They help on a daily basis, both the professionals who are dedicated to care, as well as the patients and their families. Therefore, thank you to the Moving Forward project!
"First of all, I would like to thank you for your work and that of the whole team, not only for this project, but also for facilitating the dissemination of all the information available in Spanish, so that it can be accessible to everyone, it is invaluable, and the genetic services, when diagnosing the disease, should inform of your existence and the resources you offer. And for the psychological support project, not only for this disease, but to face any difficulty in life, it has been a gift."
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What people say about us

Everything about HD

We have compiled reliable information to give you an overview of Huntington’s disease. You will find interesting, clear, and didactic links to articles, FAQ sheets, videos and audio files about the history, basics, and symptoms of HD. We believe that the better you understand HD, the better prepared you will be to deal with this diagnosis.

Research

We have compiled information about past, ongoing and future HD clinical trials and studies. You will also find didactic contents about the basics of clinical trials and drug discovery pipeline. We believe that the more knowledgeable you are about the research process, the more proactive you will be in the collective effort to find effective disease-modifying treatments for HD.

Support

We have compiled different sorts of information (articles, videos, podcast, online forum) to help HD families adjust to this diagnosis and get to know the HD global community. You will find valuable resources that provide psychological support, as well as practical tips to better cope with HD challenges. We believe that the more tools you have to help you face HD, the better quality of life and well-being you will achieve.

– May 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.

– 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.

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.

– May 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.

– 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.

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.

More than 110 people joined us on this spring day, where we shared stories, reflections, learning and experiences, and where we were able to share with all attendees the reading of chapter 10 of the book, by Luis and Sergio.
 
You can experience a part of this event with us by watching this short 10-minute video recorded during the presentation.

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.

How can HD families get proper help?: Online Session for the Norwegian HD community

 – May 3rd, 2024

The European Huntington Association, the Moving Forward team and the Landsforening for Huntingtons sykdom are organizing an online session in Norwegian with the topic “How can HD families get proper help?”.
The Zoom session will be held on 🗓️ 7th May, from 18:00 CET to 19:30 CET.
 
We have invited three family members from different regions of Norway to share their challenges and successes in the quest to find the best support possible for people impacted by HD. Attendees will have the chance to hear about real-life experiences, ask questions and share their own personal stories if they want.
 
This will be a unique event, since the meeting will not be recorded to ensure people feel comfortable and safe to meet and share their stories. We hope that you can join us on this second online informal meeting that aims to bring the Norwegian HD community together!

The inspiring Chronicle of a Fortune Foretold from Luis Aguilar is now available on book!

– April 24th 2024

Over the past months, the Moving Forward project has been disseminating the chronicles of Luis about the tears and cheers of being at risk of Huntington’s Disease.
 
Now, Luis’ unique chronicles related to Huntington’s Disease have been compiled in a bilingual edition (Spanish and English) with the wonderful illustrations of Paloma Agüera. The book has 5 original and exclusive chapters and illustrations you will not want to miss.

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

Over the past months, the Moving Forward project has been disseminating the chronicles of Luis about the tears and cheers of being at risk of Huntington’s Disease.
 
Now, Luis’ unique chronicles related to Huntington’s Disease have been compiled in a bilingual edition (Spanish and English) with the wonderful illustrations of Paloma Agüera. The book has 5 original and exclusive chapters and illustrations you will not want to miss.

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.