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The Road to Advocacy

“The Wright Brothers flew right through the smoke screen of impossibility” – Charles Kettering

“If we all worked on the assumption that what is accepted as true is really true, there would be little hope of advance.” – Orville Wright

Before my son got sick, I would wonder after seeing the pharmaceutical ads on TV when the list of potential side effects came following the smiling, happy go lucky faces, like Julie Andrews in The Sound of Music twirling on the mountain top, who would, in their right mind, take those drugs?

Then my son got sick… REALLY SICK, and I learned who. He was melting away in front of me; none of the drugs were helping until Humira, and it was a godsend; I’m not going to lie. He was finally able to eat, and it enabled him to regain a certain sense of “normalcy” and enter medical school and residency.

But within the 3 years of his diagnosis, I knew 3 people personally who lost their lives, one of whom got lymphoma while the others had become completely drug resistant. The momma’s nightmare, my nightmare was brushing against my skin and chilling me to the bone.

Since his diagnosis, I frequently run into people who insist there is no possibility of a cure. These same people who believe that a cure is impossible, insist that I should simply accept my son’s fate. Although some cope by making the best of it, finding silver linings in their garment of disease, others push to overcome the “impossible”.

My son has refused to let the disease define him or stop him, but he has never been in full remission, and he struggles every single day. Luckily, he at least partially responds to treatment. Others aren’t so lucky.

As a mom, I HATE that he has this disease. I HATE that it’s chronic without an end. I HATE that the cause hasn’t been identified. I HATE that the only solution for him is to inject himself with drugs that are so powerful that it might trigger lymphoma, or lead to dangerous infections. I HATE that he cannot go out and enjoy his life like his colleagues because of crushing fatigue. I have bundled this hatred up into advocacy to push for answers, to find the cause, to press for better, effective, and safer treatments and yes, a CURE!

This advocacy angers people. And the anger comes from all sides. Some people think I am in the hands of big pharma because I’m not bashing them 24/7. Others are threatened because I dare to critique the way things are and think I’m ungrateful for the progress that has been made. Still others believe I’m robbing Peter to save Paul. All I am, is a mom of a sick kid (adult now!) who believes we can do a whole lot better. We owe it to everyone who suffers from this disease, families, and caregivers included.

At Propel a Cure we are a dedicated bunch, patients, and caregivers with a sense of urgency to move forward and make it happen today. We believe, like the Wright Brothers, that we can fly through the smokescreen of impossibility to the possible. And we are actively engaged every single day to make it happen.

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