PSP Society of Canada
P.O. Box 40, Station Main K7L 4W6 Kingston, ON, Canada

New research has identified a genetic variant which determines how quickly the neurodegenerative condition Progressive Supranuclear Palsy (PSP) progresses, once... symptoms begin. The genetic variant relates to a gene called LRRK2. This gene has previously been linked to the risk of developing Parkinson’s Disease, so this new finding also suggests that there is a genetic link between the two conditions. The research study is being led by Dr Ed Jabbari and Professor Huw Morris at UCL and involves just over 1000 PSP patients, including those taking part in the PSPA-funded PROSPECT study. Dr Jabbari was funded by a PSPA clinical research fellowship and by the Medical Research Council. The study found PSP patients who carry one version of the LRRK2 genetic variant were more likely to progress slowly, whereas, patients who carried the less common version of the genetic variant, progressed more quickly. Dr Wendy Edwards, PSPA Research Manager, said: Identifying the genetic variant which determines the speed at which PSP progresses is a major development in our fight against PSP & CBD. We’re keen to see what the next steps of the study will bring and how it will lead to targeted treatments for the underlying causes of the conditions. Dr Ed Jabbari, said: While more research needs to be done, this finding opens the potential to target LRRK2 in future clinical trials as a treatment that may slow down PSP in its tracks. Next steps for the research, will include working out exactly how LRRK2 affects the rate of progression in PSP, and potentially related tauopathies such as Corticobasal Degeneration (CBD), with a number of potential mechanisms currently under investigation. To read the paper in full, please visit http://www.thelancet.com//PIIS1474-4422(20)30394-X/fulltext https://pspassociation.org.uk//research-identifies-geneti/

Next #ernRND joint #webinar with ERN EURO-NMD and the European Academy of Neurology Manage Progressive Supranuclear Palsy Update on Diagnostics, Biomar...kers & Therapies 26 January 2021 Günter Höglinger, Medical University Hannover, Germany Sign up here https://bit.ly/33U8Kzx We scheduled more webinars on RARE NEUROLOGICAL diseases for 2021 , check the updated programme and sign up here http://bit.ly/33mMY4C #neurology #rarediseases #ShareCareCure #education Deutsche Gesellschaft für Neurologie e.V. - DGN Sociedad Española de Neurología (SEN) International Parkinson and Movement Disorder Society PSPA Deutsche PSP-Gesellschaft e.V. PSP Society of Canada Progressive supranuclear palsy European Federation of Neurological Associations European Brain Council Hospital Clínic de Barcelona LMU Klinikum Medizinische Universität Innsbruck Centre Hospitalier de Luxembourg Istituto Neurologico Carlo Besta UKSH Universitätsklinikum Schleswig-Holstein UniversitätsKlinikum Heidelberg Uniklinikum Tübingen Österreichische Gesellschaft für Neurologie Uniklinikum Salzburg - SALK Kepler Uniklinikum Uni-Klinikum Erlangen Universitätsklinikum Düsseldorf Universitätsklinikum Hamburg-Eppendorf - UKE Universitätsklinikum Freiburg The Michael J. Fox Foundation for Parkinson's Research Parkinson's UK CHU de Bordeaux CHU de Toulouse Institut des Maladies Neurodégénératives Bordeaux Federation of European Neuroscience Societies (FENS)

PSP PHYSICAL THERAPY PROGRAM Neck Stretches * Easy to do while sitting... * Suitable for those whose symptoms have advanced Thank you @kaelan for your guidance __________________ #progressivesupranuclearpalsy #progressivesupranuclearpalsyassociation #progressivesupranuclearpalsyproblems #progressivesupranuclearpalsyawareness #progressivesupranuclearpulsy #progressivesupranucleapalsy #progressivesupranuclarplasy #progressivesupranuclearpalsey #multiplesystematrophy #multiplesystematrophyawareness #multiplesystematrophyawarenessmonth #multiplesystematrophycoalition #multiplesystematrophyawarnessmonth #multiplesystematrophymonth #corticobasaldegeneration #parkinsonism #parkinsonisms #parkinsonismdiseases #frontotemporaldementia #frontotemporaldementiaawareness #frontotemporaldementie __________________

PSP, CBD, MSA Virtual Support Group REMINDER: TONIGHT Wednesday November 18th, 2020... No registration necessary No password needed Paste this link and GO. https://zoom.us/j/92329071770 7:30PM (EST) __________________ #progressivesupranuclearpalsy #progressivesupranuclearpalsyassociation #progressivesupranuclearpalsyproblems #progressivesupranuclearpalsyawareness #progressivesupranuclearpulsy #progressivesupranucleapalsy #progressivesupranuclarplasy #progressivesupranuclearpalsey #multiplesystematrophy #multiplesystematrophyawareness #multiplesystematrophyawarenessmonth #multiplesystematrophycoalition #multiplesystematrophyawarnessmonth #multiplesystematrophymonth #corticobasaldegeneration #parkinsonism #parkinsonisms #parkinsonismdiseases #frontotemporaldementia #frontotemporaldementiaawareness #frontotemporaldementie __________________

PSP RECIPE PROGRAM: Avocado Chocolate Pudding For those with advanced swallowing symptoms. Be sure to blend very well! Thank you as always to @christinetherd for her guidance and for the lovely images in our video.... Please see our YouTube channel for more Recipes! (Search PSP Society Canada on YT). __________________

Triceps Extensions For those is the later stages of movement and rigidity symptoms. Thank you @kaenewman for this as usual! Please see our YouTube channel for ...more exercises (Search PSP Society Canada on YT). __________________ #progressivesupranuclearpalsy #progressivesupranuclearpalsyassociation #progressivesupranuclearpalsyproblems #progressivesupranuclearpalsyawareness #progressivesupranuclearpulsy #progressivesupranucleapalsy #progressivesupranuclarplasy #progressivesupranuclearpalsey #multiplesystematrophy #multiplesystematrophyawareness #multiplesystematrophyawarenessmonth #multiplesystematrophycoalition #multiplesystematrophyawarnessmonth #multiplesystematrophymonth #corticobasaldegeneration #parkinsonism #parkinsonisms #parkinsonismdiseases #frontotemporaldementia #frontotemporaldementiaawareness #frontotemporaldementie __________________

My Dad was loved by so many.He was a kind, gentle, generous person, always available to help others. PSP robbed him of so much, BUT it couldn’t take away his beautiful spirit and his subtle humour.I started writing down some of his responses from our talks over the past couple of years in the LTC home when I would come to visit After a long walk wheeling Dad in the wheelchair Me: Are you hungry for a snack? Dad: Yes, I did quite the workout. After Tuesday Bingo at the hom...e Me: How did you do at bingo last night? Dad: Poopy Sometimes the wait on the toilet was a little long. Me: They'll be here soon; they are looking after others Dad: Where? Florida? I always encouraged him to talk, so I would ask him questions and patiently wait for answers Me: So, what did you have for breakfast this morning? Dad: Same old shit. Feeding him lunch Me: Chili looks good, smells good. How is it? Dad: It's food... Got to home after Mom had taken him to hearing appointment and find him in the sitting in the room by himself Me: Where's Mom? Dad: Fishing After another night of bingo at the home Me: See you played bingo last night (dabber ink in on his fingers). Did you win? Dad: Yes. Me: What did you win? (expecting the answer to be a chocolate bar - the usual prize). Dad: a new car (laughing) One time one of his favourite PSWs was in tending to him. PSW (Looking directly at Dad) What are you looking at? Dad - A thing of beauty. (always the charmer) Talking to Dad about his upcoming 81st Birthday only a couple of weeks before he passed... Me: So, do you know how old you are going to be on Sunday? Dad: Pretty darn old. I love you Dad and I will miss you so much.but I carry with me the lessons you taught me and all the wonderful memoriesand the comfort knowing that you are now free from PSP.. @cindy.ronald See more

His nickname was Cornie. He loved golf, biking with me, and watching sports. He was well known in our neighborhood for his generosity in helping with handyman projects . They all loved him. He was a faithful and very loved usher in our church. His constant spontaneous humour earned him his nickname. We were thankfully able to do some travelling in his retirement years.