Coming up in October! the 2016 CurePSP International research Symposium. Our symposiums bring together the best minds in neurology to discuss advances and the future of brain disease research.
THU, OCT 27 AT 7:00 PM, JERSEY CITY, NJ
CurePSP 2016 International Research Symposium
By: Jaclyn Zendrian
CurePSP 2016 International Research Symposium
CurePSP conducts an annual International Research Symposium that brings together international investigators to hear about and discuss the latest advances in prime of life neurodegeneration including PSP, CBD, MSA and related diseases.…
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I just reviewed it and it sounds like its researchers but I am sure they would allow anyone to register and learn.
I did find this FAMILY CONFERENCE
Among its various educational activities, CurePSP sponsors and organizes family conferences across the country, providing people with the opportunity to learn more about PSP, CBD and MSA and to develop a sense of community. We recognize that these diseases present daily challenges for patients and families.
The conferences include various speakers with in-the-field expertise - neurologists and movement disorder specialists who work directly with patients and their families. These experts address issues related to day-to-day life including the best ways to manage symptoms, the impact of the diseases on the family, and how to cultivate perspective of meaning and joy despite the struggles of the disease.
In addition to the educational facts learned during the session, patients, caregivers, and families learn that they are not alone. Attendees leave the meeting having forged new friendships in the PSP, CBD and MSA communities.
CurePSP strives to meet the needs of those who attend our conferences and actively seeks feedback to improve future programs. We place great value in identifying the topics or speakers that are of the greatest interest to attendees.
Save The Date! 2017 Phoenix Family Conference
March 17-18th, 2017 at the Hilton Phoenix Airport Hotel
Thank you for taking the time to share all that , I don't come onto this site often . I just read of you sad loss on a previous link , so sorry . Take care x
Thank you MidsDofCBD. It has been a tough three weeks. On Monday, it will be four weeks since I have seen my guy and I feel like this is just a bad dream. I keep expecting him to walk in the door or to be in our bedroom. I am brokenhearted. Thanks for your message.
Something about this site and answering questions or commenting brings me peace. Because you all get how awful this disease is and I don't know where I would have been with out all of you.
I am just trying to get by without my guy. I haven't been able to move a thing. I lost it with the housekeeper moved his toothbrush!!! It's been very emotional for me. I just cry and cry. I cry at the most odd times with the most odd people! I am sure I freak them out.
I just keep thinking and hoping my Les will walk in through the front door and that this is just a bad dream. Awful! I know he is in peace, he is pain free and no longer suffering but I miss everything about him.
Sending you love. Was wondering how you ( and your children ) were holding up. Has your daughter started her college classes? And your son, is he opening up and communicating his grief? Your husbands passing hit me hard as he seemed to be in an earlier phase than mine. This disease just seems to progress in a random fashion. I am in awe of your courageous actions before he passed. I'll bet he is watching over you and wants you to know he is ok now. Try to eat and sleep and get fresh air. Find a good grief counselor or support group. You are not alone.
Both kids started college and are living at home--thank goodness. My son was going off to college but decided to withdraw from that college 1 week before Les passed and my daughter had already decided to come home because her college program is completely online. So blessed to have them with me during this difficult time.
Yes, Les' passing was so unexpected. He was still independent but needed some help with a few things. Was sleeping most of the day, his vision was terrible but still eating and swallowing well. We were in shock! I am sure he is watching over me and the kids. I miss my guy!
Les was in my dream last night for the first time and he was calling my cell. I answered and he said, "Nik, I am calling to say goodbye and to tell you that I am sorry that I left you so soon." I woke up and realized it was a dream and tried so hard to go back to the dream because I wanted to keep hearing his voice!! He voice sounded fantastic. I have been waiting to see him in a dream, but instead I heard his voice through my cell phone. I miss my guy so much.
How good to feel you could get close again. Our loved ones always live in our hearts. We get more used to the hole they leave but not used to the loss.
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The struggle is over, the fight was difficult the warrior strong.
Any examples of genetic cases?
