Hi, my name is Amber Simonds I am a 28-year-old Florida native that was diagnosed with Spinal Muscular Atrophy in 2000. Spinal Muscular Atrophy is a genetic disorder that affects the control of muscle movement. As my symptoms of SMA have progressively worsened, I went from being able to walk in 2000, to having to use a walker, to only being able to take very few steps with a walker, and ultimately being bound to a wheelchair.
I am full of life and have never let SMA get the best of me. I am a loving daughter, sister, aunt, and friend that is always willing to go the extra mile for anyone in my life. I continue to work, support my family, and do all of the things in order to live a happy and fulfilling life. I juggle my doctor’s appointments and work; I do so by having faith that one day I will be able to recover from this genetic disorder which has affected me most of my life.
With what has seemed like an eternity of appointments and therapy, doctors have finally approved a medication that can treat Spinal Muscular Atrophy. Spinraza is the first and only approved medication that can treat Spinal Muscular Atrophy. Spinraza has been offered to me so I can start regaining strength at a price. I have explored many options of how I can gain access to this miracle medication but I have run into a wall. Each vial of medication is $125,000. This price seems out of reach at the moment but I have faith that there are good people out there that are willing to help. Please visit spinraza.com for more information.
Reaching my donation goal will change my life forever; it will give me the ability to walk again. Any donation is welcomed and appreciated, no donation is too small. I can promise that I WILL NEVER GIVE UP until I am walking on my own two feet. Thank you for your thoughtful consideration and kind support!
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