2016 West Coast Family Conference will be held at the San Mateo Marriott, San Mateo, CA, February 19 - 20. The event kicks off Friday evening with a networking reception and roundtable discussion, featuring actress and CurePSP National Spokesperson, Patricia Richardson. Two support groups will also take place Friday evening. A full day of exciting and informative sessions, beginning with a patient profile, follows on Saturday. Topics include:
Typical Trajectory of a PSP Patient
Clinical Trials and the Patient Engagement Program (PEP)
Research from CurePSP
Communication and Swallowing Interventions
Living with PSP and CBD
Diagnosis and Advocacy
Learn more about prime of life neurodegenerative diseases, connect with others sharing your journey, and meet CurePSP staff and volunteers at the 2016 West Coast Family Conference. CurePSP kindly thanks Seniorly and 1800wheelchair for their sponsorship of this event.
I may live in the states but San Mateo is still a thousand miles away!!!!bummer anyone going west? we would stuff an overnight bag, and hitch a ride......heaviest things are the cans of Jevity/5 a day!
Even though I live in California, I understand the difficulty getting to the meetings. I find that CurePSP does post youtube videos of the conferences that I have found helpful. I just re-watched one from last year. It covered PD, PSP, CBD and MSA. My husband entered Year 3 since diagnosis, so I am trying to get a grip on how he is doing vs where he was. I used this video to provide benchmarks. It also helps me prepare for visits to the neurologist and anticipate and prepare questions.
That is what I did when I watched this utube about PSP. I took 2-3 pages of notes to help keep up with where my husband is and to take to the neurologist.
Kryste, thank you for posting this. I wish we could go because it should be interesting. Will they be putting it on utube or live scanning it for those of us who cannot go?
I do not know but I will be sure to ask them to and let them know how important it is for all of us to be able to hear what they say so I will see what I can do or who I need to talk to.
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