Sunday, July 22, 2012

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!

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?


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!

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!


  1. This warmed my heart, and brought tears to my eyes. I know the doctors will reach their goal one day very soon. xo

  2. It really would have been nice to have met your parents as well Avery! I live in Columbus, Ohio and have been raising money for Dr. Burghes and Dr. Kaspar for 14 years now. 100% of all our money raised goes directly to these researchers! My daughter's health with SMA changed drastically over the last 3 years and so I haven't been able to hold our annual fundraiser- but money is still being raised towards this research and I am so very happy that you and the MANY donors have been able to help me continue what I set out to do. THANK YOU to all the individuals,families, groups and organizations contributing!

  3. How i have missed these precious blogs. I am so happy to see progress is being made in the fight against SMA. and mike and laura--it is wonderful to see smiles on your beautiful faces.

  4. I too have been watching and waiting for an update. It is amazing to see you guys carrying on so strong. All of my prayers go out to you and the doctors battling this disease. I am deployed right now an have a 7 month old daughter who is the light of my life. She has a smile just like Avery's and when I get back home, her and I will begin working on some more of that list in Avery's honor.
    Looking forward to the day when we can all say that SMA stands for Shoulda Missed Avery.

  5. Mike and Laura, how amazing you two are! I'm so proud of you and of the progress you have made through Avery for her SMA friends! May God continue to bless you on your journey!!

  6. Wow! Sounds like some amazing strides are being made in the fight against SMA. God bless you and your little wings, sweet Avery.

  7. It's so nice to see an "Avery update"! We think of your family often and are happy to hear about promising research from Dr. Kaspar. Avery touched our hearts and we will continue to make donations in her honor whenever possible. Warmest wishes to you Mike & are amazing parents!

  8. Thank you so much for update! It so good to here from you. I pray for you and the scientists working on a cure for SMA every night. Avery, you are a beautiful girl.

  9. Just donated $10.71 for Avery. I wish I had more to donate more. XOXO

  10. i was so happy to see that you had written again avery, thanks, it really made my day. :) that is amazing, all that dr. kaspar is doing. and all that you, your parents, and your SMAns are doing too. :)
    thanks for another update, and i'll check for more all the time. :) <3

  11. I'm proud to tell you Avery that I made a donation in your memory! So glad to always see your pictures and updates. Thinking of you lots!

  12. So great to read your updates. I still think of you and your darling angel often.

  13. Thinking about little Avery and her upcoming birthday this weekend. Praying God's comfort and peace be with you! I'm sure there is going to be a big birthday party in Heaven! =)