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A fight against ALS and for those living with terminal illnesses

August 17, 2016

 

After the ALS ice bucket challenge drenched the world two years ago, Larry Kaplan is taking it further.  Visiting 50 states in 30 days, Kaplan is letting the nation drench him.  On August 25th at Dumont Plaza, Meridian residents will have their chance to flip the bucket.

 

“We want to extend a special invitation for ALS patients because there isn’t a registry, and we aren’t able to reach out to them.  I don’t know who they are, in this county especially.  We want them to be here if they can,” said Rosie Schuurman, who lives in Lauderdale County.

 

Kaplan’s goal is to raise $100,000 towards finding a cure. Schuurman knows just how important this mission is.  Her close friend, Matt Bellina, has been living with the terminal illness for four years. 

 

“His wife is expecting their third child.  He is only 34.  He knows he only has a couple of life left.”

Schuurman and Bellina grew close while he was training to be a pilot at NAS meridian.  She wishes to possibly keep him alive with experimental drugs that show promise.  But Bellina can’t try them due to FDA regulations.

 

“It’s not going to be available to him because he didn’t start the testing, and they won’t let him try it,” said Schuurman.

 

She and others are lobbying congress to pass the Right to Try bill.  If signed into law, patients will have the right to receive experimental drugs.  Schuurman is asking the community to join her, not only in fighting ALS, but in helping patients like her friend.

 

“Everybody knows a terminal patient.  It may be cancer or any one of the other terminal illnesses.  If this bill gets through, we’re going to be able to have them a drug that’s being tested, that’s cutting edge.  And there will be no discrimination of age, or anything.  They’re going to be able to have it whether they started the testing or not.”

 

The ALS ice bucket challenge starts at 5:00 p.m.  For more information about the Right to Try bill visit righttotry.org.

 

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