Yep, as you can tell by the title, this a catch up post lightly touching on many topics. For various reasons, it has been tough to find time for writing but I have a chance today so will try to cover all of these topics (and maybe more) in this post. Let’s get started!
Rallying to the Challenge – 2018
As you might recall from my last post, we had just attended the Grand Challenges in PD meeting in Grand Rapids MI. This is a two day meeting that brings together scientists, clinicians and people with Parkinson’s to explore the latest in Parkinson’s disease research. The meeting is hosted by the Van Andel Research Institute and includes a parallel meeting for PwP’s hosted by Van Andel and The Cure Parkinson’s Trust. This is one of the few meetings that brings us all together and gives the Parkinson’s community a chance to provide input impacting ongoing and planned research. Even better, we got to say hello to many old friends while making many new friends as the meeting progressed. At the end of the meeting, the Cure Parkinson’s Trust presented the Tom Isaacs Award to two outstanding individuals, Professor Bas Bloem of the Netherlands who founded ParkinsonNet, an innovative PD care program and Simon Stott, who publishes the Science of PD Blog about current research in PD which I have mentioned in previous posts.
Parkinson’s Movement Website
The Cure Parkinson’s Trust sponsors the Parkinson’s Movement website which is maintained by PwP’s for PwP’s. This website has recently had a total makeover and I highly recommend you add it to your list of sites to visit on a regular basis. The site has information about on going research and provides opportunities to get involved in research or share your insights. They have a section called Hype vs Hope where they ‘fact check’ recent news stories, claims of a cure, etc. They also have have a large list of PD advocates listed along with their country of residence, the topics they advocate for and other information. Check it out here.
Care Partners Month
November is National Care Partners Month and I know that you, like me, are thankful for your care partner(s) everyday of the year. But this is a good time to remind you and your care partner that there are a lot of resources available for care partners including the Caring and Coping guide written for care partners for any stage of PD and available for the Parkinson’s Foundation. You can download a copy or order a paper copy here
Tuesday the 27th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example, after successfully raising one million dollars last year, the Michael J Fox Foundation is shooting to raise two million dollars this year with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.
(And Maybe More)
Ben Stecher who writes the Tomorrow Edition blog has started a 9 part series about the Search for a Cure. The first part was just published and can be viewed here. Ben has traveled the world interviewing researchers, medical professionals and others about what they are doing and what the impact might be on the search for a cure, what the cure might look like and when it might happen. So, another recommendation, sign up to follow Ben’s blog and his search for the cure.
Dr Ray Dorsey at the University of Rochester in New York is conducting a web based study to see if using a computer with a webcam and microphone will provide sufficient information for patient followup. The entire study is web based and takes about 10 – 15 minutes. It requires a computer with webcam and the Chrome browser but it is quick and easy and a chance for you to participate in a clinical trial without leaving your house. You can get more information and participate in the trial at this website.
OK that wraps it up for this post. I hope everyone has an enjoyable Thanksgiving Holiday!
“It does not matter how slowly you go as long as you do not stop.” – Confucius