May 14 – Breakthroughs

RADICAVA has been demonstrated to slow decline of physical function by 33 percent

MDA 5/5/17 

“The FDA has granted approval of edaravone (brand name Radicava) for the treatment of ALS.  It’s the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years. 

Radicava is thought to work by relieving the effects of oxidative stress, which has been suspected to play a role in the death of nerve cells called motor neurons in people with ALS. (Oxidative stress is an imbalance between the production of free radicals and the ability of the body to counteract or detoxify their harmful effects with antioxidants.) Targeting this pathway could potentially preserve motor neuron health, which could in turn, keep muscles functional for a longer period of time.

Delivered by intravenous injection, Radicava is administered with an initial treatment cycle of daily dosing for 14 days, followed by a 14-day drug-free period. Subsequent treatment cycles consist of dosing on 10 of 14 days, followed by 14 days off-drug.”

And I’m officially on the list to get the drug!!

Dr. Heitzman told us at clinic on Friday that the drug has been approved, it will be in the United States in August, Texas Neurology is going to be in administration site, and they are still working to figure out the details. He is anticipating that insurance will be a hassle but hopefully not as much as with other diseases that MDA helps with (Duchenne’s and SMA), because those are in the $750,000 to over $1 million a year to administer where is this one will be in the $150-$200,000 range. like with anything new, they have approval of the manufacture but there’s not a whole lot of information out yet about what it’s going look like to receive the drug. he said ideally the best way to do it would be for me to get a port like chemo patients have, and the clinic have a pharmacist on hand to mix the cocktail and mail it to us for home administering. 

Per usual, I will keep everyone updated with information as I find it out. Thank you to everyone who has shared the exciting news of the drug approval, this is huge!

Join Team SunnyStrong:

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7/5 ALS Awareness Night at the Rangers 

9/16 MDA Muscle Walk at Globe Life Park 

11/4 ALSA Walk to Defeat ALS at Trinity Park 

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