Wednesday, May 2, 2012


I added a new blog to my blog list just a few days ago. I'm sure many of you had heard about it. It's Avery's Bucket List. Avery was born with SMA. Had you heard about SMA before? I already knew what it was. I knew because of a mom who is part of the same on-line community as me. We've been on this website for years and Catherine has been sharing Sophia's story starting with her diagnosis. It was out of this diagnosis that Sophia's Cure was born. This mom (and dad) had just received an awful diagnosis for their sweet baby girl. They didn't let it knock them down, they are fighting back.  They've raised so much awareness about this disease and have done AMAZING things to help get funding for a gene therapy that is being developed.

That brings me back to Avery. Avery was also bringing awareness about SMA to the public. Her story and blog were on numerous news outlets throughout the country. Sadly, Avery lost her battle with SMA very suddenly on April 30th. But the awareness continues. Avery's family asked that donations in Avery's name be made to Sophia's Cure towards the gene therapy research. I just got an update that they've collected more than $89,000 in Avery's name since her passing and that number is growing quickly! And even better is that an anonymous donor who had previously donated $400K to SCF pledged to match all donations made in Avery's name up to $500,000!

Those are huge numbers with huge potential. There are so many kids out there still fighting this disease -- Sophia included, she turned 3 years old earlier this year! This has the potential to save so many lives. I can only hope that seeing all of this money raised in Avery's name brings her family a little bit of peace through all of this. I know for me, seeing that total grow after Ryan was born was one of the things that kept me going.

Everyone has been so generous with helping us raise money for the March for Babies Walk in memory of Ryan. What is probably not known is that it was Catherine and Vinny who inspired me to set something up in Ryan's name after he was born. I couldn't sit and let our situation be in vain. I remembered the courage that they had when Sophia was diagnosed. I wanted the same for us. I wanted to make changes. I'm so proud to report that as of today $10,053 have been raised for the March of Dimes in Ryan's name (between the Preemie Band we set up and out fundraising for the MFB Walk). All of that in just under 1 year. Thank you to each and every one of you -- no matter the size of the donation it all means so much.

It's really amazing how much someone you've never met can inspire you. With that, please be inspired. Please take a minute and learn about SMA. Check out the blogs and make a donation. Great things are happening -- don't you want to be a part of that?

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