Tagged: advocacy

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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