Avery's Bucket List: July 2012

Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!

On August 13^th at 7:05 PM, the Sugar Land Skeeters will be honoring Avery with “A Day for Avery” at the ballpark and will be crossing a few more items off of her Bucket List.

The Skeeters will be wearing special jerseys in honor of Avery and ask everyone wears purple that night to “Purple Out” the stadium. In addition, the players will be wearing special jerseys in Avery's memory for a post-game jersey auction and they will be giving out special STRIKE OUT SMA bracelets to the first 2000 people at the gates. Fans will also have the opportunity to participate in the world’s longest first pitch where donations can be made to go down onto the field along with other special surprises. which will benefit Dr. Kaspar's Gene Therapy program for a cure through Sophia's Cure Foundation.

Tickets will have a special price of $16, of which, $10 from each ticket will be donated towards Dr. Kaspar's Gene Therapy program for a cure through Sophia's Cure Foundation.

To purchase tickets online, please go to:
https://www.ticketreturn.com/prod2/Buy.asp?EventID=76490&promocode=AVERY2012

Don't forget to share my story by following & forwarding my blog, following me on
Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will be a cure for my friends who already have SMA!

http://www.facebook.com/AverysBucketList

https://twitter.com/#!/AveryBucketList

If there's anything you'd like to mail me, you can send it to:

Avery's Bucket List

PO BOX #2849

Bellaire, TX 77402

As of July 10, 2012 your donations made towards Dr. Kaspar's Gene Therapy program have totaled $355,468.51. Could you imagine what this figure would be if every time someone clicked on my blog they would donate $1 towards a cure? There would be almost $6,000,000 donated to date...wow!

Keep in mind the $355,468.51 figure will be matched by an anonymous donor who was touched by my story and wants to help fund a cure for current & future friends with SMA and their families. Keep in mind in order for the match to be made and for your donations to be tax deductible, you must donate through Sophia's Cure Foundation. I also think it's important to note that 100% of all money being donated is going towards Dr. Kaspar's Gene Therapy program!!!

There have been many donations to other organizations, but at this time I do not have a total to provide you. I do believe that with your help, almost $400,000 to date has been donated in my name towards helping my friends with SMA. Thank you again to everyone who has helped, whether it be via donation or by sharing my story, talking to others about SMA, and informing people about my friends who still need help!

Here are some photos from my trip to visit Dr. Kaspar's labs with my mommy, daddy, and the generous man who donated $111,111.11 in my memory and in honor of my birthday.

Me, mommy, and daddy headed to Ohio!

Once we arrived in Ohio, we met up with Vincent Gaynor (Sophia's daddy and the founder of Sophia's Cure Foundation), as well as Dr. Arthur Burghes and Dr. Brian Kaspar (they are the researchers who are trying to help my friends). It was quite amazing how well everyone got along and how each of us were brought together through my story and for one common goal, to cure SMA.

From left: Generous Donor, my daddy, my mommy, Dr. Brian Kaspar, & my friend Sophia's Dad Vincent.

Now I have no idea what any of these things are in the upcoming photos, just know they are going to be very helpful in Dr. Burghes & Dr. Kaspar finding a cure for SMA...

After leaving the labs, my mommy, daddy, and the very nice man who made the large donation were all extremely impressed with the researchers, their progress with their research, and the efforts they are making towards an advancement in curing SMA. Though we could not take pictures of the animals, we did get to see mice, rats, and monkeys with SMA who were being treated by Dr. Kaspar. I believe the coolest thing we saw on the entire trip was when a little mouse with SMA was running all over the place with other non-SMA mice. Here's how I saw it through my daddy's face:

At first the SMA mouse was let out of his cage and he just laid still. You could see panic and disappointment in daddy's face.

Then the little fella barely moved while other mice were running all around him. Daddy was not happy. But if you think daddy was worried and upset, you should have seen the face of the generous man who made the large donation...he looked like mommy did during her first trimester with me in her tummy. BUT THEN...

The little mouse started army crawling around and before you know it, he was running around faster than most of the other mice!!! Apparently he thought he was a possum and not a mouse, either that or he told all of his mouse friends watch this, haha. Can you believe it though? A mouse with SMA has a life expectancy of less than 15 days. This mouse was 60 days old and moving around better than other mice without SMA! It was truly an amazing site to see when you also consider some of the mice with SMA who are being treated by Dr. Kaspar are living up to 365 days! To put this into further perspective, even the healthiest of mice aren't expected to live more than 2 years in a lab.

Dr. Kaspar's treatment is not only helping mice, but the FDA has already approved his research in non-human primates and is currently not requiring any further studies on non-human primates. So the next logical step is for the FDA to give approval to Dr. Kaspar to begin clinical studies for my friends. Come on FDA! What are you waiting for?

Please click here to donate to Dr. Kaspar's SMA Gene Therapy.

IF YOU DO NOTHING ELSE, PLEASE SHARE MY STORY WITH EVERYONE YOU KNOW AND HAVE THEM DO THE SAME!!!