*Attitude of Gratitude* Treatments, A Cure, a Medication, Clinical Trial Opportunities, a Possibility for a Future, SMA Free... Terms and Phrases never before Uttered in our Community, much less truly Believed. Hope is Now the New Norm, but it hasnt always been that way. Parents didnt used to hear about promising results and drug opportunities, but rather that there was nothing that could be done for their child, and to go home, love them as long as they could, and make them as comfortable as possible. *** I wanted to take a moment to recognize the Families that have gone before us. Those that have been Living with SMA for Far Longer than we have even known about it. Who were fighting against SMA before we ever knew it existed, and have been hoping against hope that someday we would be dreaming about how close we are to a Cure for SMA. *** So many families have walked this road before we have and without them we wouldnt be where we are today. I know I am not alone in saying that we appreciate the struggle you have endured, the ups and downs, the good days and bad, and the decisions you had to make that no parent should ever have to. While we may not know exactly what you are going through all of the time, or have been through in the past, know that we walk this road together, and you will never be alone. We would not be where we are today without those who have come before us, who have paved the way, blazed the trail and spoke up about an illness that was misunderstood, long before a Cure was ever on the horizon. 2 years ago when my son was originally diagnosed, we were told there was no treatment or cure, nothing we could do, no trials or medications and left the Doctors Office with no hope. ....and They were wrong. My How Our Outlook Has Changed in such a short amount of time! SMA specific Doctors and Researchers have made huge advances in Basic Research and Science, Found Possible Therapeutic Strategies and Disease Modifiers, and put those into Real SMA Patients via Clinical Trial. True Medical Progression towards a Treatment and a Cure for Spinal Muscular Atrophy, that we can truly see! Part of that success, is Us! The SMA Community! We need to use our Strength and our Hope as a Motivating Factor, as our Driving Force, to Change the Face of SMA for the Families in our Community, Forever. Elevate your voice. Increase your influence! By Educating those around us, Promoting Awareness and Understanding of SMA, Raising Funds for Continued Research and Expanded Trials, by Sharing our Experiences in our Communities & by Telling Our Stories to those Around Us, we increase the likelihood of making some noise, and being heard. Lets make the statement Oh, Ive never heard of SMA, whats that? disappear! 2015 is a New Year and I have a Resolution, do you? Together we can Cure SMA! SMA is The Number 1 Genetic Killer of Children Under Two. It just also happens to be Number 1 of over 600 Diseases, deemed (((Closest to a Cure!))) In 2015, Lets take it off the list.
Posted on: Thu, 08 Jan 2015 02:31:34 +0000
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