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MSA MEETING LEUVEN (Belgium) MSA MEETING LEUVEN (Belgium) Two MSA research teams at World MSA Day event @ HistArUz Leuven, Belgium Monday October 3, 2016, HistArUz, Capucijnenvoer 35, Leuven, Belgium Room: KAPEL Firstfloor. Organized by The Belgian Patients Support Group: MSA-AMS BE MSA Meeting: Voor Patiënten, Mantelzorgers en Familieleden HistArUZ Capucijnenvoer 35, 3000 Leuven Maandag 3 oktober 2016 Lokaal KAPEL 1ste verdiep Georganiseerd door MSA-AMS BE vzw Patiënts Support Group PROGRAM Organizing committee …………………………………………………………………………………………………………………… 3 Program of the Day …………………………………………………………………………………………………………………… 4 JiePie AWARD 2016 …………………………………………………………………………………………………..……………… 5 Who is Who ………………………………………………………………………………………………..………………… 6 Veerle Baekelandt ……………………………………………………..…………… 6 Janice Holton ………………….…………………………………………..…………… 7 Marc Dooms …………….……………………………………………………………… 9 Erik Tambuyzer …………………………………………….……………… 10 Ritje Schouppe-Moons …………………………………………………………… 11 Jan Jambon, …………………………………………………………… 12 Maps & Directions to the venue: …………………………………………………… …………………………………………..……………… 13 HOTEL Accomodations nearby: ………………………………………………………………………………………………..……………… 14 Sophia Fund: ………………………………………………………………………………………………..……………… 15 MSA is like the three flavoured Neapolitan ice cream. By Pam Bower – JiePie Award for MSA Awareness Ambassador 2012: ……………………………………………………………………………………………………..……… 17 MSA-AMS.be Leuven 2016 MSA organizing committee Ritje Schouppe-Moons, Chairwomen of The Board of Directors MSA– AMS BE vzw Dr. Veerle Baekelandt Professor faculty of medicine KU Leuven and project leader (BE Team) Dr. Janice Holton, Director of Neuropathology Queen Square Brain Bank and project leader, (UK Team) Marc Dooms, Senior orphan drugs specialist, Katholieke Universiteit Leuven, Belgium, and member of he Fund for rare diseases and orphan drug of the King Baudouin Foundation. Meet and Greet: 2 MSA research teams at World MSA Day event @ UZLeuven, Belgium The 2 winning teams of the Sophia MSA research Grand / Fund, will join the Meet & Greet session. The venue at the University of Leuven - visit @ the laboratories and an update on the on-going research. MSA-AMS.be Leuven 2016 PROGRAM 08:45 – 09:00: Registration participants– and Welcome Coffee Morning Chair: Erik Tambuyzer PhD 09:00 - 09:15: Opening: Ritje SCHOUPPE-MOONS, Chairwomen of The Board of Directors MSA–AMS BE vzw Meet and Greet : 09:15 - 09:45: Dr. Veerle Bakelandt, BE Team Leader Sophia Fund 09:45 – 10:45: Prof Dr. Janice Holton, UK Team Leader Sophia Fund 10:15 - 10:45: Coffee break 10:45 – 12:00: Visit research area and Discussion, at the Fifth Floor": Laboratory for Neuroscience and Gentherapy 12:00 – 13:30: Welcome to the MSA Patients, Caregivers, and Family Members … Walking Lunch all together with the 2 teams Afternoon Chair: Marc Dooms 13:30 - 14:00: What is MSA and latest news about European MSA Research: Update 14:00 – 14:30: Q & A: Patients / Medic 14:30 – 14:45: JiePie Award 2016 14:45 – 15:45: Guided Tour @ the Museum : One History, 1000 Stories & Rare diseases and orphan drugs: 500 years ago. "first floor" with Marc Dooms (Eng) Dominique Boogaerts (FR) (Nl) 15:45 – 16:00: Closing Remark 16:00 – 16:30: Reception MSA-AMS.be Leuven 2016 JiePie Award 2016 JiePie Award organising committee, Mr. Jan Jambon, Deputy Prime Minister and Minister of Security and Interior Affairs in Belgium. We are privileged that Mr. Jan Jambon is godfather from MSA-AMS BE vzw since our first JiePie Award celebration in 2011. Ms. Ritje Schouppe-Moons, Chairwomen of The Board of Directors MSA –AMS BE vzw Ms. Pam Bower, Board of Directors - Secretary, The Multiple System Atrophy (MSA) Coalition, USA Ms. Lesley Denys, Board Member of MSA-AMS BE vzw Nominees for the JiePie Award 2016 for MSA Awareness Ambassador: "I HAVE A DREAM....CURE MSA” "J'AI FAIT UN RÊVE, GUÉRIR L'AMS" “IK HEB EEN DROOM, MSA GENEZEN!“ JiePie Award 2016 for MSA Awareness Ambassador PRESENTED TO - Robert (Rob) TIMMERMANS, Drongen, Belgium - Lea Koolmees – Demper, NL MSA-AMS.be Leuven 2016 Who is Who: Veerle Baekelandt PhD: Professor at Laboratory for Neurobiology and Gene Therapy, KU Leuven Veerle Baekelandt, PhD, obtained a degree of Master of Romance Languages (1987), Master of Biology (1991) and a PhD in Biology (1995) at the Katholieke Universiteit Leuven. In 1992 she received a Frank Boas Fulbright scholarship for graduate study at Harvard University and became a research fellow in the Laboratory for Neuroscience Research headed by Dr. Larry Benowitz, Children’s Hospital, Harvard Medical School, Boston (1992-1993). In 1999 she joined as a post-doctoral fellow a new gene therapy project for neurodegenerative diseases, which was the start of her own research group. In 2003 she was appointed as assistant professor at the KU Leuven and in 2007 as full-time research professor (BOF-ZAP). She is now head of the Laboratory for Neurobiology and Gene Therapy. Her research focuses on disease modeling and therapy for Parkinson’s disease using viral vectors in cell culture and in vivo. The underlying rationale is that the generation of more relevant models in cells and in pre-clinical model brain will lead to a better insight into the molecular pathogenesis of PD and to the development of new therapeutic strategies and drugs. Professor faculty of medicine KU Leuven and project leader.(Belgian team) “It is my ultimate dream that our research will contribute, even at long term, to an effective therapy for patients with MSA or Parkinson’s disease” Research Group for Neurobiology and Gene Therapy - KU Leuven Kapucijnenvoer 33 blok i - bus 7001 – 3000 Leuven +32 (0)472 [email protected] 120.000 € (Sophia Fund) Dr. Veerle Baekelandt, and her Team will join the meeting MSA-AMS.be Leuven 2016 Prof Janice Holton, Honorary Consultant and Professor in Neuropathology Director of Neuropathology Queen Square Brain Bank and project leader, (UK Team) “Multiple system atrophy is a devastating incurable disease affecting people in the prime of their lives. My research goals are to improve understanding of the disease mechanisms leading to treatment development and a positive impact on the lives of MSA patients and their caregivers” Janice Holton, Director of Neuropathology Queen Square Brain Bank for Neurological Disorders, dept of Molecular NeuroscienceUCL Institute of Neurology, 1 Wakefield Street - London WC1N 1PJ + 44(0)[email protected] 120.000 € (Sophia Fund) Dr. Janice Holton, Professor of Neuropathology, Dr Aoife Kiely and Dr Sandrine Wauters (UK Team) will join the meeting. Looking forward to the opportunity to visit Leuven and meet others working on MSA. Honorary Consultant and Professor in Neuropathology Prof Holton participates in the routine work of the Division of Neuropathology reporting neurosurgical specimens as part of a team of 6 Consultant Neuropathologists and has responsibility for the adult muscle biopsy diagnostic service. Prof Holton is actively engaged in research in the field of inflammatory muscle diseases and has recently written a book chapter on the subject. She is a founder member of the Council of the British Myology Society. MSA-AMS.be Leuven 2016 Queen Square Brain Bank The Queen Square Brain Bank (QSBB) houses one of the largest neurodegenerative brain tissue resources in the UK. This unique collection consists of cases of Parkinson’s disease, hereditary forms of parkinsonism and cases presenting with an atypical parkinsonian syndrome such as progressive supranuclear palsy, corticobasal degeneration and multiple system atrophy. Since 2002 a prospective collection of brain tissue from well-documented early onset and familial dementia cases has been added to the portfolio. Approximately 90 cases are received each year and all are subject to an extensive diagnostic process and a full report is issued by either Dr Holton or Professor Revesz. Following this, cases are made available to researchers for study. Dr Holton is actively involved in neuropathological research in the fields of multiple system atrophy, Parkinson’s disease and dystonia. National Committees Prof Holton is an active member of the British Neuropathological Society and has held the offices of Treasurer and Chair of the Education and Meetings Committee. In the latter role she was responsible for the organization of the annual meeting of the Society including the preparation of the scientific programme. She also organized two summer schools on behalf of the Society. Editorial commitments Prof Holton has been a member of the editorial board of Neuropathology and Applied Neurobiology, the journal of the British Neuropathological Society since 2006 and has acted as an Executive Editor since January 2012 MSA-AMS.be Leuven 2016 Marc Dooms : Lecture: Rare diseases and orphan drugs: 500 years ago Mr. Dooms (Pharm D) is Senior Orphan Drug Pharmacist at the University Hospitals Leuven. He is compounding/dispensing pharmacist in First in Men Randomized Clinical Trials. He has been a member of the Belgian Order of Pharmaceutical Sciences and the Flemish Society of Hospital Pharmacists (VZA) since 1975 and the Belgian representative to the European Union of Experts in Rare Diseases with frequent collaboration with Orphanet, the European Society of Clinical Pharmacy, and the American Society of Health Care Pharmacists, among others, since 2000. Marc Dooms received his pharmacist diploma at the Catholic University of Leuven, where he graduated in 1973. In 1974, he was pharmacy teaching studies certificated at the Catholic University of Leuven, and in
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