Next week we will be launching the research and science expert forum on PatientsLikeMe. Before the week begins, we would like to give you a little more information on the structure of the events. We also have a few more experts to reveal!

The research and science expert forum is a chance for you to ask all of those technical questions about AKU. If you want to know about the clinical trials and what their results could mean for you in the future, this is the time to ask. Whether you want to understand how animals have contributed to AKU research, or how the genetics of AKU work, this is the event for you.

In addition to the experts we revealed in the last expert forum blog, there are also a few more who will now be joining us during the week.

Professor Isaac Jebaraj Jesudason

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Professor Jebaraj worked until recently as an Orthopaedic Surgeon at a medical college in Vellore, India. He is now retired, but continues to work in a large Mission hospital as an Orthopaedic Surgeon. He has participated in International workshops conducted by the AKU Society in Liverpool and Slovakia, and is the Founder President of the AKU Society in India.

Professor Jebaraj has been doing research in AKU for the past 15 years and has published eight papers highlighting the various clinical aspects of AKU. He has been involved in the symptomatic treatment of more than thirty patients and has conducted hip replacements and tendon repairs in AKU patients. He is the person to ask about the medical science behind AKU, and the research work happening outside of Europe.

Professor Jonathan Jarvis

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Jonathan Jarvis is a muscle physiologist. He is Professor in Sport and Exercise Science at Liverpool John Moores University, and works with colleagues at the University of Liverpool and the National Alkpatonuria Centre (NAC) at the Royal Liverpool University Hospital.

He manages a colony of mice that have a mutation in the same gene affected by AKU in humans. This means he is able to follow the very early stages of the disease in these mice. Fortunately they do not suffer the arthritis that makes AKU so disabling in human middle age. Jonathan investigates tissues from these mice to try to understand why the metabolic defect in AKU produces dark pigmentation of cartilage tissue of the joints.

Jonathan also introduced colleagues in sports biomechanics to the AKU project. This resulted in gait analysis looking at how AKU patients walk becoming part of the assessments at the NAC. We are also using gait analysis in our SOFIA study to analyse how AKU patients from different age groups walk. Jonathan is the man to ask about early stage research and the use of animal models for AKU. He will be available to answer your questions for the last two days of the forum, on Thursday 14th and Friday 15th August.

Dr Peter Wilson

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Dr Peter Wilson is a postdoctoral research assistant in the Institute of Ageing and Chronic Disease, University of Liverpool working with Professor Jim Gallagher. His main expertise is in molecular biology.  Part of his work has involved collecting AKU patient samples following surgery, and preparing them for further research. He has worked on many AKU projects over the years and is currently working on projects involving the AKU mouse model to test new therapies.

If you are a patient who has donated a sample following surgery, Dr Wilson is the person to ask about how it was used to contribute to research. He can also answer some of your questions on how animal models are used in AKU research. Dr Wilson will be joining the forum discussion on Wednesday 13th and Thursday 14th August.

Dr Richard Harbottle

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Richard Harbottle studied Human Molecular genetics and his research in the past has focused mainly on developing DNA technologies for gene therapy. He is a founding member of the British Society for Gene therapy and has served on its executive board since its beginning. He is also an active member of the American and European Gene Therapy Societies.

His is currently researching next-generation DNA vectors for gene therapy. This research could help develop gene therapy techniques for genetic diseases such as AKU in the future. Richard is the person to ask about research into gene therapy.

Join now

If you haven’t got a PatientsLikeMe account, don’t worry. Signing up is easy, fast and completely free. Just head over to the PatientsLikeMe website and make sure you join the AKU community when you sign up.

When the event begins on Monday you can start your own forum topic to discuss a certain issue by clicking the green button in the top right which says ‘New Topic’. All you have to do is start the forum title with ‘Research Forum’ so it is clear to our experts that the question is for them. If there is already a forum topic which is relevant to your question, you can simply click in to the existing forum and join the discussion by adding your question to the feed. E.g. If the forum topic is ‘Research Forum- Clinical Trials’ and your question is about our current clinical trials, you can click on the forum and ask your question in this section.

To find out more information about the rest of our experts, check out the first research and science extravaganza blog. If you have any questions about the event, please get in contact with Sorsha by emailing [email protected].