Saturday, August 2, 2014

August is SMA Awareness Month & the 3rd Annual brAvery Run!

Please share Avery's story by updating your social networks, e-mailing all of your contacts, talking to your friends/co-workers, and definitely tell your Ob/GYN about Avery's story and maybe they'll routinely start offering SMA testing.  If we can help save a few of Avery's friends and their mommy, daddy, and loved ones from SMA, then Avery's life, while cut short in time, will continue to be fulfilling in stature.


We're not sure why August was selected as Spinal Muscular Atrophy (SMA) Awareness Month, but we are certainly happy SMA has it's own awareness month!  With that said, SMA is a 24/7/365 disease and it does not take off the other 11-months of the year.  So while this is officially SMA Awareness Month, we'd encourage you to continuously educate yourself and others about:

2. How can prospective parents get carrier tested?

3. What are some events in my area so I can support local children/families with SMA?  One upcoming event everyone can participate in from near or far is the 3rd Annual brAvery Run (only two weeks away).  We encourage you to sign up for the run in Fredricksburg, TX or join us by participating in your hometown and do the virtual run.

 4. Where can I donate to help fund research for a cure through FightSMA and/or through Sophia's Cure Foundation to continue funding Dr. Kaspar's Gene Therapy program (which back in June was officially introduced for the first time into a child with SMA - updates will be provided as we learn more)!

Lastly, as always, we want to continue to thank everyone for loving Avery and supporting us along the way.  We are forever grateful.









Don't forget to share Avery's story and continue to follow the stories of children & families currently battling SMA!  The more people aware of SMA the less likely a family will receive a diagnosis of SMA and the more likely there will one day be a cure for children currently battling SMA!

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!