111 Days Later, 1 BIG Bucket List Accomplishment!

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! 

Being far from superstitious people or the type who get caught up in "numbers or signs", we have to admit, the update we are about to provide truly boggles our minds while bringing smiles to our faces and tears to our eyes.

Yesterday evening (August 18th), exactly 111 days after Avery passed away, we received a phone call from Vincent Gaynor with Sophia's Cure Foundation notifying us that the total amount of donations in Avery's name had just reached over $500,000.  With the multiple matching donors, this means exactly 111 days after Avery passed away, she achieved her goal of raising the $1,000,000 ($1.5+ mil to be exact) necessary to fully fund the Phase 1 clinical trials of Dr. Kaspar's Gene Therapy program in an effort to cure Avery's friends with SMA.  And as soon as the FDA gives approval, estimated to be in the early part of 2013, Dr. Kaspar can begin helping Avery's friends.

Thank you to everyone who donated $0.01 to $111,111.11 and beyond.  Avery's goal could not have been achieved without you and we sincerely thank you from the bottom, middle, top, and all sides of our hearts!  Please remember to continue sharing Avery's story, spreading her message about SMA to protect future children & their parents from SMA, and helping to fund a cure for Avery's friends still battling SMA.

And lastly, please remember that Avery's goal was to raise $1,000,000 towards a cure for SMA and then do it again...she's already met the first part of that goal and now she's half way towards doing it again.  Once again, thank you for being a part of Avery's life and for continuing to be a part of her everlasting story.

Avery laughing upon being released from the hospital after her G-Tube surgery.

Items Avery Can Scratch Off Her Bucket List:

1. Raise $1,000,000 towards a cure for SMA and then do it again and again and again
2. Help fully fund Phase 1 of Dr. Kaspar's Clinical Trial

Up Next:

brAVERY 5k Run Photos & Recap!

Don't forget to share Avery's story by following & forwarding her blog, following her on 
Twitter  (AveryBucketList) and Like her on Facebook (Averys Bucket List)!  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!

http://www.facebook.com/AverysBucketList

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

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

Avery's Bucket List

PO BOX #2849

Bellaire, TX 77402

A Day For Avery (Quite the Ending To an Amazing Game!)

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! 

Last night the Sugar Land Skeeters went all out in honoring Avery with “A Day for Avery”.  They had a heart wrenching video montage of Avery they showed before the game, videos about SMA & Avery's story in between innings, a balloon release for Avery, t-shirts & wristbands for sale, and they wore special Avery game day jerseys (see below), which they auctioned off during the game.  So far they've raised over $14,000 with all proceeds being donated to Sophia's Cure.

This custom golf cart was donated by one of
Avery's SMAn's and is being auctioned off.

200 T-Shirts were donated and sold for $15
inside the Skeeters Fan Shop.  They sold out
and immediately had requests for more.

Octavio Martinez, Avery's catcher, who after Avery
 passed away inscribed Avery's initials, her birth date,
date of passing, and R.I.P. on his cap.

Thank you Davis family and all other families
who bid on a jersey and supported a cure for SMA!

Lastly, thank you to the Sugar Land Skeeters for everything and for all of the memories from Avery's first pitch and from last night.  We appreciate everyone who attended the game last night in honor of Avery and in support of SMA Awareness and funding for a cure.  Among the people in attendance last night, were many of Avery's SMAn's and family members, along with Nancy Burford (Avery's speech pathologist), Dr. Paul Minifee (Avery's glam-tube surgeon), Dr. Nancy Glass (Avery's anesthesiologist), and last but certainly not least, Savannah, one of Avery's friends came with her mommy & family.

Avery's friend Savannah with her family and
the Skeeters mascots.

Avery's SMAn's since Day 1.

Oh and in case you're wondering about the outcome of the game,  the Skeeters won 4-3 in the 11th inning when the opposing pitcher uncorked a wild pitch while trying to intentionally walk the Skeeters' Ofilio Castro who happens to wear number 11.  Considering Avery's birth date was 11/11/11, this brought chills and smiles to us all at the same time.

We miss you, we love you, and thank you for forever being with us.

Up Next:

brAVERY 5k Run (can't make it to the event, do the virtual run!)

Don't forget to share Avery's story by following & forwarding her blog, following her on 
Twitter  (AveryBucketList) and Like her on Facebook (Averys Bucket List)!  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!

http://www.facebook.com/AverysBucketList

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

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

Avery's Bucket List

PO BOX #2849

Bellaire, TX 77402

Upcoming Event: A Day For Avery at the Ballpark (August 13, 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

Update on Donations & We Visited Dr. Kaspar's Labs

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!!!

Items I Can Scratch Off My Bucket List:

1. Fly on a plane.
2. Go on an out of state trip with mommy & daddy.
3. Meet new friends


Up Next:

Whatever I bring to life through my mommy, my daddy, and through you.

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


Thank you again to everyone!

Be "BRAVE" Private Screening Event (06/23/12)

Please share!!!  

Follow the link below for more information about a private screening in Houston, TX of the new Disney/Pixar film "BRAVE".  A large portion of the proceeds from tickets sold will be donated towards Avery's Bucket List wish of raising $1,000,000 towards SMA research.

Be Brave For Avery

Up Next:

Whatever I bring to life through my mommy, my daddy, and through you.

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


Thank you again to everyone!