Friday, April 25, 2014

Dr. Kaspar's Clinical Trial is Now Open for Enrollment!


We are extremely excited to share with everyone that enrollment is now open for Dr. Kaspar's Gene Therapy clinical trial (which your donations in memory of Avery went to via Sophia's Cure Foundation)!

Thank you Dr. Kaspar, Sophia's Cure, everyone at Nationwide Children's Hospital, and any other individuals and organizations involved for their hard work and role in making this trial available to children with SMA and their families.

And a special THANK YOU to everyone who donated any amount towards this trial in Avery's name!  Once matched by Nationwide Children's Hospital and the generous anonymous donor, your donations through Sophia's Cure for this trial amounted to $1.5 million dollars!

PLEASE CONTINUE SPREADING AWARENESS about Spinal Muscular Atrophy (SMA)!!!

From left: Avery's Friend, Avery's Dad & Mom, Dr. Brian
Kaspar, & Vincent Gaynor (Sophia's Cure Founder & Sophia's Dad)





















To learn more about SMA or to make a donation towards research for a cure, please go to either of the following non-profit websites:
http://www.fightsma.org/




Monday, March 10, 2014

Carter (3.5 months Old & Quickly Growing)

Many of you have sent us messages asking for updates about our family and Avery's little brother Carter.  We want to thank you again to for loving Avery and continuing to care about our family.  Below are some recent photos of Carter and don't forget, if you haven't already done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them because you never know how it might positively impact their lives or this disease.

It's amazing to us how much Avery & Carter look alike in their profiles.
Avery at 5 1/2 months old.
Carter's a happy morning (pretty much all day)
baby just like his big sister!
Just like Avery, it doesn't take much to get Carter to smile big for you.  The following photos were taken about a month ago and all it took was mommy's comfortable shoulder and daddy's funny facial expressions and noises.

We just wish he liked traveling in his car seat more.

He smiles big and promotes big smiles in return :-)

And what's life without a little laughter every now and then?


To learn more about SMA or to make a donation towards research for a cure, please go to either of the following non-profit websites:
http://www.fightsma.org/

Angel Avery


Tuesday, December 3, 2013

Avery's Little Brother (Carter Bryant) Born 11/23/13

Avery officially became a big sister to an SMA-free baby brother on Saturday, November 23, 2013.  We are extremely proud to welcome Carter Bryant Canahuati into our family while helping Avery scratch one more item off her list (Become A Big Sister)!
Mommy, Daddy, Carter and big sister Avery moments after Carter's arrival.





Yeah little buddy, we imagine somewhere your big sister
Avery is smiling big too!
Thank you again to everyone for loving Avery and continuing to care about our family.  If you haven't done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them...you never know how it might positively impact their lives or this disease.

To learn more about SMA or to make a donation towards research for a cure, please go to either of the following non-profit websites:http://www.fightsma.org/




Thursday, October 10, 2013

Avery's Lil Brother (Maternity Pics)

Thank you Paperhearts, Photography by Jessica Laviage for capturing this moment in our lives and for your kind words.  I think Laura said it best when she said, "I don't think of myself as a hero at all, just a mom with a precious little girl"...and in 7 weeks (give or take), a precious little boy too.









Thank you again to everyone for loving Avery and continuing to care about our family.  If you haven't done so today (or in a while), tell someone you know about Spinal Muscular Atrophy (SMA) or reach out to an SMA family in your area and ask what you can do to help them...you never know how it might positively impact their lives or this disease.

-Mike & Laura, aka Avery & Carter's Mommy and Daddy-



Thank you again to everyone!

Friday, September 20, 2013

FDAvery Approved!!!


The FDA has approved Dr. Kaspar's Gene Therapy program!  
We would like to say thank you to Dr. Kaspar and his team at Nationwide Children's Hospital, along with Sophia's Cure Foundation and numerous other families of children with SMA for working vigorously towards making this day become a reality.

We would also like to thank everyone who followed and supported Avery and donated to Dr. Kaspar's Gene Therapy program.  We hope you'll take a few minutes today or this weekend to celebrate this accomplishment while continuing to spread awareness about SMA!


Lastly and most importantly in our humbly biased opinion, we would like to give special thanks to our amazing daughter Avery for inspiring us and countless others.  We ever so dearly love you and we will forever miss you.

We will finish this post with an adorable and amazing video from the Gaynor family (Founders of the Sophia's Cure Foundation) announcing the FDA's approval.


Even though Avery is no longer physically with us, please don't forget there's plenty of children and others living with SMA, so please share Avery's story by forwarding her message to your friends & family members!  The more people who are aware of SMA, the less likely future children will be diagnosed with SMA!


Thursday, May 30, 2013

For Avery's 2nd Birthday...



I Think We'll Make Her A BIG Sister!

Avery's lil' sibling due in November 2013


Avery aka "Big Sis" at 1 Day old.  
Thank you again for loving Avery and for your immense support.  We ask that you 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! 


Saturday, March 23, 2013

Excellent news in the fight against SMA!


Families of SMA and Nationwide Children's hospital have agreed to a 3-year cooperative agreement in the amount of $3,752,462 to help further fund pre-clinical drug development of Dr. Brian Kaspar's Gene Therapy program. 

Press Release from Families of SMA:

http://www.fsma.org/LatestNews/index.cfm?ID=7638&TYPE=1150

If you would like to make a personal contribution towards Dr. Kaspar's Gene Therapy program you may do so through Sophia's Cure Foundation.  Thank you as always for your continued love & support of Avery and all of her SMA friends & their families.


Pictured (from left to right) at Dr. Kaspar's labs in Nationwide Children's Hospital: Avery's friend/donor, Avery's Dad & Mom, Dr. Brian Kaspar, & Sophia's Dad (Vincent Gaynor). 
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!