This graphic was designed by Don's granddaughter, Gracie Sladek
I would like to invite you into our lives. We hope that you will be able to shine a light on the challenges for patients in clinical trials and eloquently share our story with the world. There is power in your words, and we hope they will stir action, and my husband, Don Sladek, will be granted access to Biogen’s medication BIIB092, Gosuranemab.
At this moment, I would like for you to be able to “feel” our story. Please take the time and sit with us a spell. Imagine your loved one: Is it your child, a spouse, a parent, or a dear friend? Pause. See them in that precious place in your heart. You know, the memory we love to replay, the memory that allows us to so purely and totally love them.
Now hold that memory close to your heart; feel its breath, embrace your arms around it…
Imagine a vast and open sea. Look and see your same loved one in the middle of the ocean. They have been treading water, but are now exhausted. There is no longer the ability for them to keep going, and you are helpless to intercede. The only thing you can do is watch them die.
Stop and feel these all-consuming, powerless, hopeless, sick-to-your stomach emotions. Let them overwhelm you to the point that you cannot even breathe.
Pause with these feelings, and imagine living with them for years…
Now imagine there is only one life-raft company that is making life rafts. You know, in your heart, the odds of that life raft actually reaching your loved one is virtually non-existent, and yet the manufacturer has dared to throw one to your most precious person. You are still helpless, but you see your loved one climb aboard. Do you dare have hope?
And now you watch, and pray...your loved one is slowly floating back to you. They are safe and secure in this life-raft. You begin to have hope and dream of the future. You become euphoric with the possibilities stretching before you and a life full of promise.
You begin to live a new life in this raft with your loved one, and you are so very grateful for each and every moment. There is a peace and calm that you had all but forgot existed. The storm of despair has subsided, and the shore is in view.
Breathe deeply, embrace your loved one, feel the sun’s warmth melting away your fears…
Splash!! What has happened??? The life-raft company has pulled the life raft right out from under you. Are you close enough to swim to shore?? Yes, you are, but your loved one is not. You reach out your hand to grab them, and they continue to slip away; further and further, back into the open sea they go, leaving you hopeless...again...
But look! There’s the life-raft company! Appeal to them! Plead with them to give your loved one back their life-raft!... Surely they will respond...
And they do...the answer is, “No.”
Hoping you will share our story,
Chavonne and Don Sladek
The life-raft company is Biogen. The life-raft is the medication BIIB092, Gosuranemab. And Don is still left out in the ocean...drowning...
#TreatingCBS #Treatment4Don #RightToTryAct #Biogen #CBS #CorticobasalSyndrome #Gosuranemab
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“I would like to thank all of you from the bottom of my heart that took the time to read this site and those that took action concerning my situation with CBS. The clinical trial has helped my quality of life. My goal has always been to help science to help others with this terrible disease. God bless and thank you all.”
- Don Sladek