Friday September 22, 2017
|14:00-15:30|| ||Bulgarian Session: Research update – most promising pathways to HD treatment|
This session will be in Bulgarian and no translation to English will be provided.
Dr Juliana Bronzova, neurologist
|16:00-16:30|| ||Opening and welcome|
|16:30-17:15|| ||HD in Bulgaria seen from a family member, a neurologist, and a health carer|
Hristina Dimitrova, Dr. Sahka Zheliazkova, Nataliya Grigorova
|17:15-17:35|| ||Coffee break|
|17:35-18:15|| ||What does it mean to grow up in an HD family? What are the children's needs?|
Ass. Prof. Melinda Kavanaugh
|18:30-19:30|| ||Parallel sessions – dialogue sessions/work groups:|
- Genetic testing
Dr. Alzbeta Muelhbaeck, neuropsychiatrist
Genetic testing is a serious and demanding decision. Dr Muelhbaeck has met many HD affected who consider to test or not. What are the implications – is it right or wrong for me to know my genetic status? Dr Muelhbaeck will also present the international guidelines for test procedures, the main differences between presymptomatic and diagnostic testing. The participants will be able to ask questions, share thoughts and experiences.
- The importance of physical activity
Susan o'Neill, senior physiotherapist and Dr Juliana Bronzova, neurologist
For many years the benefits of physical activity in HD mice has been known. Lately there have been several clinical trials with HD patients being physically active. How can systematic activity improve health condition and quality of life in HD? Susan o'Neill is an experienced physiotherapist at the Bloomfield Hospital near Dublin, Ireland. Dr Juliana Bronzova has been focusing on the “move pill” for a long time. Physical activity is the most efficient treatment for HD we have today. So we should take it, shouldn't we?
- Frustration in HD – strategies to lower the level of frustration both for HD patients and carers
Dr. Dirk Liessens, physicatrist
In HD families and among professional carers we often experience a lot of frustration. Everyday events suddenly get very complicated. Where does this frustration come from and how can we deal with it? We believe it is possible to reduce the level of frustration through understanding the mechanisms that may be underneath. We may do things in a different way and we may think about the situations in a different way to make us feel better and act better.
- Clinical (patient) trials ABC for non scientists
Dr Ferdinando Squitieri and Dr Ralf Reilmann, neurologists
We are all waiting for a breakthrough in the search for treatments. How are the trials being conducted? Why is it taking so long from the idea to approved drug? Dr Squitieri and Reilmann are principal investigators in several HD clinical trials.
Saturday September 23, 2017
|8:30-09:15|| ||HD on the move|
We know that physical activity is good for all and particularly good for HD affected. That’s why we encourage you to go for a walk in the morning. Start from the hotel entrance at 8.30. The organizers will be there and walk together with you. Bring good shoes and some water.
|9:30-11:30|| ||Parallell sessions: working groups:|
We encourage the participants to bring questions, thoughts and their experience to the sessions. We want to learn from each other. The experts don't have all the answers.
- Personality – does HD change it or disguise it?
Pollard has for decades been head of a care facility for HD patients. He is the author of the book: “Hurry up and Wait!” Some of the physical features of HD combine with some of its cognitive features to create the appearance that one may be angry, tired, not interested or bored. Although we may know those we love so closely, even we can be mistaken! By looking closely at all these features we can more easily see the one we love through Huntington's Disguise! Let's examine the disguise together and talk about new ways to describe it to others.
- Juvenile Huntington
Dr Ferdinando Squitieri
JHD is very rare and sometimes we tend to forget this extraordinary severe condition in HD conferences. Dr Squitieri will talk about the typical symptoms in JHD and how it best can be treated.
- Nutrition, eating and swallowing – needs, challenges and solutions
Dr Klempir and Angela Nuzzi
Nutrition and keeping a healthy weight can be a big challenge for HD patients and their carers. Dr. Klempir and Nuzzi have been focusing on this key area in HD and will share their knowledge about how HD patients can be assisted in the best way. Eating is a major part of ones quality of life – being afraid to eat is devastating.
- Dealing with psychiatric disturbances and disorders
Dr Alzbeta Muelhbaeck, neuropsychiatrist
How can psychiatric illness in HD be treated in the best way? HD represents a huge complexity and sometimes treatment must be out of the mainstream box to be efficient for HD patients. Dr Muehlbaeck is running an HD clinic and as a neuropsychiatrist her experience in this field is highly valuable.
- Minding your Mental Wellbeing in HD
Dr. Andrea Higgins, neuropsychologist
Living with HD in your family or as a professional carer is often a stressful situation. How can you take care of yourself and at the same time take care of the people around you? We need to recognize our own needs to be a good family member or professional. What feelings are common and somehow demanding in your situation and how can you deal with it in a good way?
|11:30-12:00|| ||Coffee break|
|12:00-12:45 || ||Plenary sessions|
How can we collaborate to be “Stronger together” – developing a HD service from the ground up
Dr. Jennifer Hoblyn, Clinical Director, Bloomfield Hospital, Ireland
At Bloomfield they started to provide services for HD families a few years ago. They made it happen despite difficult economic frames. What factors are crucial to making this possible?
|12:45-13:15|| ||Genetic testing – best to know or not?|
Dr. Alzbeta Muelhbaeck A difficult and demanding choice – who needs to know and how should testing be done in order to make sure it`s beneficial?
|14:15-15:00|| ||Can we delay age-of-onset? About lifestyle influence. |
Prof. Monica Busse
We know with great certainty that the number of CAG repeats is among several factors that influence age of onset and symptom development in HD. So, which lifestyle factors are beneficial and how do they influence health status in HD?
|15:00-15:15|| ||Small time-out with physical activity|
Mr Vera comes from an HD family he is a teacher in physical activity and engaged in HD community.
|15:15-16:00|| ||Clinical trials – how to measure if treatments work. Challenges in HD research|
Dr. med Ralf Reilmann and Filipa Jûlio, neuropsychologist
HD symptoms often develops slowly and are difficult to measure. In trials it's a challenge to measure the effectiveness of a treatment. New methods are underway and we need these to perform more efficiently to validate trials.
|16:00:16:15|| ||Coffee break|
|16:15-17:30|| ||Parallel sessions – discussion groups:|
In these groups we want to gather people with the same background/position in HD. The session is a kind of support group where one mediator helps move the dialogue forward. The participants are encouraged to share thoughts and experiences, but you are also allowed to be mostly a listener if that is the right thing for you.
- At-risk/gene positive or negative
- Partner to at-risk or gene positive/negative
- HD Symptomatic
- Partner to HD symptomatic
- Professional care - challenges and successes
In this group we expect you to share the challenges and successes you have experienced in your work with HD families.
|17:30-18:15|| ||Yoga and Mindfulness in practise - A way to take better care of yourself|
Amy Merkel, yoga teacher from an HD family
|20:00|| ||Gala Dinner at the hotel with music and dance |
Sunday September 24, 2017
|08:30-9:30|| ||HD on the move – walk and fun with Rodolfo Vera|
We encourage all participants to join us in this walk. We meet at the front door of the hotel at 8.30.
There will be two options: one for the fast ones (run or walk) and one for the slower ones (walk for pure pleasure and with medium pulse rate)
Remember to bring good shoes. Mr Vera will lead us all with his enthusiasm
|9:45-10:20|| ||Plenary sessions Huntingtin lowering therapies - an update|
Prof. Sarah Tabrizi
These therapies are among the most promising in HD. Prof. Tabrizi is principal investigator for one of the trials. What are the trials about and what are the perspectives?
|10:20-11:15|| ||An overview over research and clinical trials|
Prof. Bernhard Landwehrmeyer
There are several pathways to treat HD. What trials are ongoing and what are the perspectives for the coming years?
|11:15-11:45|| ||Summary and goodbye |