Money, Money, Everywhere But Where It Should Be! Stroke Survivors Beware

Reading two articles that recently appeared in the Naples Daily News on preventing a type of stroke called atrial fibrillation through the use of anticoagulant drugs, I was most interested that the article was focused on preventing stroke with elegant new drugs that had millions of dollars behind them. The article was focusing on the effect of large sums of money and industry relationships that suggest “an old boy’s club”.

Bob with Dr. Dale Corbett

Dr. Dale Corbett – Scientific Director and CEO – Canadian Partnership for Stroke Recovery at the 2014 Partnership Scientific Meeting

In my book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor I discuss the drug approval process from a patient perspective and that the FDA plays a critical role. When I am speaking to an audience, many of whom are stroke survivors like myself or stroke caregivers a common question is “What is the state of rehabilitation research?” To which I answer – “The field is amazingly underserved considering that stroke is the number one long-term disabler disease.”

There is puzzlement in the audience to which I explain that most stroke rehabilitation is more physiological and mechanical and does not require drugs where the big research money is. Therefore, rehabilitation research is more dependent on government funding which has declined on a non inflationary dollar basis over the past ten or fifteen years. Unfortunately, even in the Government sector, stroke does not get its fair share which I will discuss further in a future blog post.

I am sometimes chastised for discussing the sorry state of stroke research however one knowledgeable administrator at a US Government clinical research site wrote me while I was editing the book, “Are we deficient in having sufficient rehab options and preventive strategies for people – absolutely! But that is another problem…”

As the recent Founder of The Stroke Research Foundation, Inc., a 501c3 headquartered in Naples we are focused on this problem – this conundrum! We seek to improve post-stroke lifestyles by developing strategies and technologies to maximize stroke recoveries of our neighbors in SW Florida, and nationally, many of whom are affected by this dreaded disease.


Stroke Victor Bob Mandell invited to attend the Canadian Stroke Congress as a US Survivor Media Representative

The Canadian Stroke Congress has been recognized as a leading conference which brings stroke experts from around the world together to advance stroke prevention, management and recovery. The 2015 Canadian Stroke Congress has received the endorsement from the World Stroke Organization. The Congress will be held in Toronto September 17-19 2015. Bob will be posting articles about the latest technologies in stroke rehabilitation during and after the Congress.

Members of the US professional stroke recovery community as well as survivors who have particular questions should contact Bob at bob@strokevictor.com prior to the Congress.


Naples’ Bob Mandell goes from stroke victim to victor

When a stroke paralyzed Bob Mandell 19 years ago, he couldn’t speak.

“I couldn’t get two words out,” he said.

Now, the Naples resident can’t talk and learn enough about the disease. One month ago, he completed writing a book “Stroke Victor: How To Go from Stroke Victim to Stroke Victor.”

While he told his story of going from stroke victim to stroke victor, he also brought out eye-opening information including:

  • Federal spending for stroke research doesn’t rank in the top 10 among diseases despite being the No. 1 long-term disabler and the No. 5 killer.
  • Almost 80 percent of strokes are preventable if people had better diets and exercised more.
  • More than 1/3 or 34 percent of strokes happen before age 65.

“Cancer is a hurricane, stroke is a tornado,” Mandell said. “It comes out of nowhere. Stroke also is an underserved disease. It’s an orphan disease. It’s part cardiology, part neurology. There’s not much privately funded research in strokes and some government research.”

Mandell will talk about his book, which he hopes will be the first of several launch receptions, Sunday at the Sanibel Community House on Sanibel. He’ll also talk about The Stroke Research Foundation, a charitable 501c3 organization for the purpose of increasing post-stroke rehabilitation options to dramatically improve post-stroke lifestyles today.

Read More here

http://www.news-press.com/story/life/wellness/2015/07/20/stroke-bob-mandell-paralyzed-book-stroke-victim-stroke-victor-sanibel-naples/30304087/


Stroke Victor: Out, About, Involved & Active!

For the past eighteen years Bob Mandell has battled to recover from a massive stroke that left him in a nursing home at 53. Incontinent, paralyzed on one side and in a wheel chair, unable to speak, think, write, or do much of anything else, his life turned into a disaster! Fast forward to today: life after stroke can be beautiful. Bob remains out, about, involved and active.

Here are some of the conferences and events that Bob has attended recently this year.

The Canadian Partnership for Stroke Recovery was held in Ottawa, Canada June 9-10, 2014. The meeting was held to discuss new research in stroke recovery and after stroke considerations. The research is currently in various stages of investigation and approval. Bob was honored to be invited to be a media person at the scientific meeting. Above is Bob with Dr. Dale Corbett (left) and Dan McEwen, a PH.D. student (right). 

 


Stroke-victor-affiliate-summit-NY


The Affiliate Summit was held in New York at the Marriott Marquis on Aug 9-12 2014.

About 4,000 marketing professionals attended to discuss affiliate marketing techniques, deal making, and to network about their interests. Bob was invited to attend and he spent time learning how to  use some of these techniques. The plan is to incorporate some of these methodologies in his Stroke Victor initiative which is in the planning stages. He met with speakers as well as many attendees who were in support of this important effort.

Pictured to the left is Bob with Keynote speaker Dr. Julie Gurner and Affiliate Summit founders Shawn Collins and Missy Ward.