A Long Swim and ALS Research – All About Teamwork #GivingTuesdayNow

A Long Swim

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Giving Tuesday 2020; A Long Swim

As much as we all would like to restart this year, 2020 looks to be one that none of us will ever forget.  We have learned what a pandemic is, and we have been consumed by worry that we are doing enough to protect our loved ones from catastrophic illness.  It is a terrifying time, made worse by the unsettling realization that our new normal is likely to be with us for quite a while.

Watching the reaction of medical researchers to COVID-19 has been very instructive.  When faced with a sudden and grave challenge, researchers throw themselves at the problem armed with their brains and their experience, their passion, and their commitment.  They are focused on solving a problem, so they collaborate and share without regard to personal attention, all so they can be part of a solution in which we can all celebrate. 

It is a perfect illustration of what ALS researchers have done for decades.  These are people who have a relentless passion for curing a very complicated disease, all so that the friends and families of ALS patients will not have to sit by powerlessly while their loved ones are slowly taken from them.  They craft new solutions with creativity and guile, they test those solutions, and they pursue them or discard them as scientific results become clear.  The promising ones are handed off to collaborators around the world, so the “sun never sets” on this critically important work.  

The difference, of course, between research to find a treatment for COVID-19 and ALS is the availability of resources.  Money.  Appropriately, COVID-19 demands immediate and unlimited resources, and the solution to that problem is expected within a few quarters.  At that point, we will know how to deal with the terrifying coronavirus whenever it may resurface in the future.

ALS research is dependent on dedicated and devoted fundraisers like A Long Swim and its donors.  It doesn’t affect that many people, so attracting big pharma’s attention will take a while; “There’s no money in it,” said Dr. David McConnell shortly after he was diagnosed.  We lost Dr. McConnell to ALS a few years later, then we lost Ellen McConnell Blakeman; we have been raising money for the cure ever since.  A Long Swim uses open water and marathon-distance swimming to raise this money, just because swimming is the perfect act of defiance to a disease that slowly robs patients of the use of their muscles.  

To date, you have helped A Long Swim raise $1 million for collaborative ALS research.  The progress has been phenomenal, and breakthroughs are coming at an astounding pace.  Supporting the collaborative Ozdinler Lab at Northwestern has been an honor, and we celebrate their discoveries related to upper motor neurons, drugs and treatment compounds, and even self-destructing mitochondria, all while they team up with centers in more than ten time zones around the globe.  

We expect to swim for a long time.  Just like COVID-19, ALS is a solvable challenge, and we want to be part of the solution.  We will never run out of channels to swim, and we aren’t going to rest until we can say that we have met an ALS survivor.  

Join us.  A Long Swim will humbly accept donations at www.ALongSwim.org under the GoFundMe button, or by mail to A Long Swim, 117 South Cook Street, Suite 248, Barrington, Illinois 60010.  We will be grateful, and the lives of ALS patients everywhere depend on it.  



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Ellen McConnell Blakewell

Ellen McConnell Blakeman succumbs to ALS

Ellen McConnell Blakeman, who broke important gender barriers and co-founded the nonprofit A Long Swim, succumbs to ALS. Ellen McConnell Blakeman of Burr Ridge, Illinois, passed away peacefully on February 11, 2018, after a twelve-year battle with amyotrophic lateral sclerosis,

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A Letter to Our A Long Swim Team

  Dear A Long Swim team, The COVID-19 pandemic dominates our thoughts and our behavior now – it is frightening to feel powerless. The A Long Swim team knows the frustrations and fear all too well. They are the same

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Knocking Down the English Channel

Oui, Oui, Wissant I sent this email to a number of members of A Long Swim team from the pilot boat heading from Wissant Bay, France, to Dover, England at 3:30 a.m. Monday.  The longer write-up appears in the journal.

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