An Incomplete Patch Work of Stroke Services – Young Stroke Retreat Speaking

Bob with Amy Edmunds at Young Stroke Retreat

Bob with Amy Edmunds at Young Stroke Retreat

Speaking at the Young Stroke Retreat in North Carolina and having dinner with the Young Stroke Foundation Founder last week brought me further evidence of the uneven patch of stroke resources that exist across our nation. Most of my recent personal experience has been in SW Florida where two Comprehensive Stroke Centers exist thirty miles apart which is supplemented by several Primary Centers in the area. Complementing that, EMS has a robust protocol and in some cases utilizes telemedicine to speed diagnoses before hospital entry.

That is not the case across the nation. In South Carolina, the state with the highest percentage incidence of stroke and where most of the Retreat participants reside surprisingly has less clarity about Stroke Centers particularly in rural areas of which there are many. Also, the EMS protocols are not as clear as they are in Florida. In neighboring state North Carolina where the Young Stroke organization is headquartered, there are several comprehensive centers and the EMS protocol is stronger.

All of this reminds me of my book’s (Stroke Victor) advice that we all should have a “Stroke Plan” which entails knowing before the fact where the closest stroke center is located. We should also know the signs of stroke so that EMS is called promptly. Time is brain!

At the retreat it was mentioned that in South Carolina 54% of strokes were in people under the age of 65, a high for the nation. Obesity and poor fitness of the population were identified as important factors of this deplorable statistic.

I spoke about my Foundation – Stroke Recovery Foundation and its mission of improving post stroke lifestyles and maximizing stroke outcomes. The group was highly supportive understanding that there is a need for more therapy resources, particularly in S Carolina.

Several of the other presentations were educational in nature, there was a report on a research study in progress at the University of S Carolina and several survivors told their stories of recovery. A lack of consistent services was a constant thread of the presentations.

Advocacy was a big topic as it is lacking in the field of stroke.


Stroke Victor Bob Mandell Attends Canadian Stroke Congress as US Survivor Representative

I, with nearly 900 others attended the 6th Canadian Stroke Congress in Toronto held from September 17-19th. In my case I had been invited to be a media person representing US survivors. An impressive effort devoted to Stroke Prevention, Treatment and Rehabilitation was clearly visible.

I was taken by the number of people devoting their lives to the various facets of stroke and stroke recovery in Canada. Besides Canadians, I met American’s who were presenting at the Congress, many of whom indicated that stroke seemed to be more fully covered and organized in Canada than in the US. That has certainly been my impression since attending the 2014 Canadian Partnership for Stroke Recovery meeting in Ottawa.

Bob at Canadian Stroke Congress - 2015

Bob at Canadian Stroke Congress – 2015

So what areas in stroke did the Congress cover?

  • The latest advances and innovations in stroke prevention, acute management, rehabilitation, stroke systems, long term recovery and basic science;
  • Approaches to stroke care, including systems and discussions of their application in practice;
  • Discussions and presentations regarding evidence based research and best practices.

There were well over 100 research posters on display in the large convention meeting room which provided a convenient place to network. Many of the posters were prepared and manned by graduate students as part of their educational efforts. Others were reports of research studies in progress or completed which the research teams wished to report to the Congress attendees.

And of course there were vendors of pharmaceuticals, adaptive equipment and interestingly some of what I called call lifestyle items. The latter were, for example, bean growers who indicated the beans were important components in healthy eating to reduce stroke risk and improve recovery with a healthy diet.

I was most appreciative to attend the Congress and wish to thank the management of the organization for giving me the honor to attend. The experience was definitely an enlightening event.


No Good Startup Names Left – Want To Bet?

Bob Mandell Speaks at Cape Coral Rotary Club

Bob speaks at Cape Coral Rotary Club

When I started thinking about forming a non-profit in the stroke area in December 2014, just a few short months ago, one of the first things that I did was to think about obtaining a good name. As a prudent entrepreneur, what do I mean by a good name? I like names that say what our focus is or what we actually do! I don’t have millions of dollars to create a brand from a name that in itself is meaningless.

The current issue of august Forbes Magazine (9/7/15) has an article entitled – No Good Startup Names Left. Let me quote them:

“In mid-August Google announced it was reorganizing itself under an umbrella company to be called Alphabet. Pardon us for asking, but are world-beating multinationals now outsourcing their name selection to first-graders?
They aren’t actually- the problem it seems, is that all of the good names are already taken. And if Google can’t come up with a decent – or at least meaningful – name for itself, what hope does the average startup have? The unfortunate result: a spate of mealy mouthed mash-ups with no relevance to what the company does…”

While I would normally agree with the Forbes writer, he or she left out one very important factor in the availability of good names – DOES ANYONE CARE ABOUT A PARTICULAR FIELD OR SEGMENT, IS ANYONE LOOKING, IS THE PRODUCT, SERVICE, OR MISSION ON SOMEONE’S RADAR? If so, the names are gone!

So let’s go back to my name finding efforts a few months ago. After thinking about what my non-profit’s mission was going to be I went to my trusty domain seller – MyCoolDomains.com and started to put names in to the search engine. Low and behold, nearly every “good” or descriptive name was available. I was stunned. How could these not have been taken years ago as the Forbes article suggests?

How could it be – a disease that is the number five killer and number one long term disabling disease which strikes over 800,000 Americans a year, and millions, yes millions more globally? How was it possible that the good names were available? Because it seems that few people seem to care! Of course there are hard working professionals in the stroke field and there is obviously research ongoing. But I learned while researching my book, Stroke Victor, How to Go from Stroke Victim to Stroke Victor that the whole field of stroke was seriously underserved in terms of advocacy, outreach and research, among other things.

So I bought a bunch of descriptive and meaningful names six or seven months ago and more since. Just a few, The Stroke Research Foundation (the name I chose), The Stroke Recovery Foundation, and Stroke Recovery Fund and believe me, it goes on. With and without the “The”!

So to this blog post’s original title – NO GOOD STARTUP NAMES LEFT! — WANT TO BET?

YES, THERE ARE GOOD NAMES AVAILABLE WHEN NO ONE ELSE IS LOOKING!

As a survivor, I CARE ABOUT THIS! MY TEAM CARES! MY VOLUNTEERS CARE AND YOU SHOULD CARE IF FOR NO OTHER REASON – IT COULD HAPPEN TO YOU OR YOURS AND THEN YOU WILL DEFINITELY WANT US TO CARE AND BE DILIGENTLY WORKING ON THIS DAUNTING TASK!

The Stroke Research Foundation intends to make a difference in the after stroke lifestyles and outcomes for millions of American’s, including many in SW Florida where I live! Stroke survivors, stroke caregivers and everyone else involved with stroke!!

PLEASE JOIN US AND SUPPORT US!