The drug development pipeline for Parkinson’s

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For a long time a regular request from SoPD readers has been to provide an overview of the clinical trial landscape for Parkinson’s, particularly in the area of drug development.

Such projects are difficult, however, as the landscape is broad and dynamic – lots of different approaches being applied and new entrants continually entering the arena. These are positive features, but to characterise the whole field is beyond my simple cognitive abilities.

But recently three Parkinson’s research advocates (with help from the research department at The Cure Parkinson’s Trust) tackled this challenge, and the output of their efforts was published in the Journal of Parkinson’s disease in July of this year.

In today’s post, we will discuss advocacy, review the current clinical trial pipeline for Parkinson’s, and explore how an analysis of this pipeline could be improved.

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Raymond Carver (Source)

“He understood that it took only one lunatic and a torch to bring everything to ruin”
– Raymond Carver

I enjoy old Raymond Carver short story collections (his 1983 ‘Cathedral‘ in particular).

He is not for everyone, but I like him. Particularly ‘What We Talk About When We Talk About Love‘. It is a story about two couples sitting at a kitchen table, drinking gin, and trying to describe what is meant by love.

Source: Encorespotlight

I thought of this short story last year when I was asked during a Q&A session at a support group meeting, “What do we mean when we talk about advocacy?” (that was the exact wording).

I didn’t mention Carver in my answer. Rather I listed some of the various ways that people can become advocates for Parkinson’s. And there are many, and it really depends on what you want to do and what skills you have or want to learn (we will come back to this near the bottom of today’s post).

Source: Endslaverynow

Advocacy comes in many forms. And in today’s post I’d like to share one inspiring example of advocacy.

Earlier this year I played a small role in a wonderful project led by a team of Parkinson’s research advocates who were focused on trying to provide an overview of the clinical trial pipeline for therapies for Parkinson’s, with the goal of raising awareness within the PD community.

The results of their efforts were published in July.

What did they find?

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Grand times in Grand Rapids

 

During the last week of September, the Van Andel institute and the Cure Parkinson’s Trust held their annual Parkinson’s research meetings in Grand Rapids, Michigan. 

The meetings – the Linked Clinical Trials meeting, Grand Challenges in Parkinson’s, and Rallying to the Challenge – provided an opportunity for members of the Parkinson’s community (both researchers and advocates) to come together, share research/knowledge/experience, and discuss what needs to be done.

I attended the meetings this year for the first time.

In today’s post, I thought I would provide some feedback and share some of my thoughts on the meetings.

 


Jay Van Andel (left) and Rich DeVos. Source: Amwayconnections

The history of Amway is an interesting story.

One of ambition, determination, and a refusal to give up.

It begins with the two founders – Jay Van Andel and Rich DeVos – trying and failing to get seven different businesses off the ground before they eventually founded the multi-level marketing company that we know of as Amway.

Source: Wikipedia

One aspect of the story that many people do not know, however, is that for a decade before he passed away in 2004, Jay Van Andel lived with Parkinson’s.

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ACT UP: Advocacy is Critical To Undoing Parkinson’s

 

In March of 2017, activists all over the world celebrated the 30th anniversary of ACT UP.

ACT UP was an international direct action advocacy group that was set up to help people with Human immunodeficiency virus (HIV) infections and acquired immune deficiency syndrome (AIDS), and more importantly to encourage legislation/policy, medical research and treatment for this devastating.

Some people might say that there have been few advocacy efforts for a medical condition that have had as much impact, or had such a lasting legacy. Others, on the other hand, would suggest that a collective AIDS advocacy effort and a paralysing fear of the deadly condition at the time stimulated most of the action action that followed. Regardless of which opinion is correct, an analysis of the AIDS advocacy makes interesting food for thought.

In today’s post, we will have look at what ACT UP did, what was the result of the overall AIDS advocacy movement, and we will discuss what the Parkinson’s (and neurodegenerative) community could learn from it.

 


Every week, the U.S. Centers for Disease Control and Prevention (CDC) publishes the Morbidity and Mortality Weekly Report (or MMWR).

It provides public health information and recommendations based on information collected by the CDC from all of the various state health departments. The material published in each report is provided as a public service and may be reprinted and used without permission.

On the 5th June 1981, the CDC published a MMWR, describing five cases of a rare lung infection (called Pneumocystis carinii pneumonia). This was an extremely rare, but opportunistic infection – it generally occurred in people with very compromised immune systems.

All of the five cases were young (29-36 years of age), and had previously been healthy, homosexual men living in the Los Angeles area. All of the men had additional unusual infections, which suggested to doctors that their immune systems were not working properly.

Two of the men had already died by the time the report is published.

One month later, on the 3rd July (1981), a second MMWR was published. This one mentioned further cases of Pneumocystis carinii pneumonia and cited 26 cases of a rare form of cancer known as Kaposi’s sarcoma, which is caused by a viral infection:

These two MMWRs were the first official reports mentioning what would go on to become known as the AIDS epidemic – a devastating, ongoing global health issue that has thus far claimed 35+ million lives.

It was also the very beginning of what would be an amazing story of patient advocacy. The one that would become the template for many future efforts. Part of that advocacy effort was called “ACT UP”, and in today’s post we will discuss what the movement was and how they achieved some amazing accomplishments.

But before we get to that, let’s start at the beginning:

What exactly is AIDS?

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