Our main goal for Annie's Miracle Foundation, has been and will continue to be, spreading the word about available treatments and helping children connect with the providers who understand and can properly evaluate to offer those treatments. When we started our journey with Annie, phrases like "I don't know whats wrong with her" or "if you do that, she will never walk again" were things we heard while on our journey. For HSP these are still phrases that many parents can agree are being said. We really want to be a resource for those considering SDR or who are just struggling with a new diagnosis. We are not limited to HSP or CP. We ultimately would like to help parents of children with any orthopedic/neurological combination requiring care. Our expertise does fall under HSP and the treatments available but we are happy to help you connect with specialists for any condition or even just help you research.
We are proud to say that officially Annie's Miracle has been granted to privilege of collaborating on a CME (continuing medication education) for the use of selective dorsal rhizotomy for CP and HSP patients. This is a huge step in spreading the word that SDR does work for HSP patients and the gross misunderstanding that SDR for HSP will cause these kids to never walk again is just that, A misunderstanding. Today we presented to over 53 clinicians across the USA and the collaboration/CME was recorded for hundreds more to watch in the coming future.
Today Annie's Miracle was part of something bigger, something that will last and will change the minds of clinicians on the use of SDR for HSP. We are so thankful to have been a part of this and continue to work towards these goals.
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