When Your Child’s Life Depends on it

This really caught my eye today! You learn something new every day!

Longreads

At HuffPost, Lauren Weber reports on how “fighter parents” like Amber Olsen (parents whose children have rare diseases) are getting scientists and profit-hungry pharmaceutical companies to do research, conduct clinical trials, and develop treatments for life-threatening, yet little-known ailments. How do they do it? With sheer determination and unrelenting superhuman efforts to raise money and awareness for their child’s cause.

Amber estimates that about 100 children in the world currently have MSD. The disease kills most of its victims before their tenth birthday and there is no known treatment ― at least, not yet.

As she watches her daughter head off to kindergarten, Amber thinks about the $2.6 million she needs to raise, the scientists she has to fund, the lobbying of Congress she must do ― all to make sure that a gene therapy to halt the disease’s progress will be created in a ridiculously short time.

If…

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