Archives for May 2012

Avery’s Bucket List continues to touch the life of everyone around the WORLD

Avery's voice continues to be heard outside of our disease community. She has connected with people and has motivated them to make a lasting change in her memory. One of those people has approached us anonymously. This donor heard Avery's voice and wanted to make a BIG difference. Initially this anonymous donor wanted to donate $11,111.11 to honor Avery's birthdate of 11/11/11. Upon reading of  the donor willing to match every dollar that comes in Avery’s name, this generous person got all fired … [Read more...]

Gene Therapy’s Major Anonymous DONOR touched by AVERY”S BUCKET LIST

Today is a day of both overpowering grief and overpowering hope in the SMA Community. As we described in our previous blog post, beautiful Avery Lynn Canahuati, of "Avery’s Bucket List" passed away yesterday at just 5 months old. In their latest blog, the Canahuati family asked that donations be made in Avery’s honor to Sophia’s Cure Foundation to help fund Dr. Kaspar’s gene therapy program, which will be headed to human clinical trial by late 2012 or early 2013. As many of you in the community … [Read more...]

SMA IT FORWARD

Super SMA KID Cashel will be turning 16 soon, he took it upon him self to start SMA IT FORWARD......He is hoping his Facebook page will reach 1 million likes by the time he turns 16....So lets get out there and get our friends and family to make this happen. and Sharing is caring :) CLick here and like  SMA IT FORWARD.... We are pulling for you Cashel. … [Read more...]

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