I'm very excited to update you on the Ava Bracelet sales. Because of your generosity, we made a donation of $164 to Cure SMA this afternoon (for a total of $464 over the course of January).[...]

Yesterday Ava received her fourth Spinraza injection! This completes her initial dosing phase so she will only receive maintenance injections three times a year going forward.[...]

First of all, thank you so much for the bracelet donations and the food from the meal train. I can’t say it enough how thankful we are for the support from our family and friends. [...]

Hi everyone! Ava's Aunt Lisa here. Thank you to all of you who have reached out to buy your Ava bracelets. Our second case has finally arrived and I have all the outstanding orders in the mail on the way to their new homes. I've already ordered another case because it seems to take about 2 weeks for it to arrive, and that seems like a million years since I'm an Amazon Prime addict. :)[...]

Ava is now hanging out at Children’s Specialized Rehab in New Brunswick where she will get longer hours daily with her respiratory, occupational and physical therapists. We miss our PICU friends in Morristown, and cannot adequately express our gratitude to the staff there. But we are so grateful to have more time with the therapists here, which hopefully will result in a more rapid improvement for Ava.[...]

Because of your generosity and support, we sold our entire case of Ava bracelets in less than 2 hours of the post! We have sold a total of 46, and we have another case on the way with more orders pending.[...]

Hi - it's Laura's sister, Lisa, again!

I bought a large box of Cure SMA wristbands (we like to call them Ava bracelets around here). With Laura and Dan's permission, I am selling them for $5 per bracelet and donating 100% of the proceeds to Cure SMA in Ava's name. In a nutshell, Cure SMA is an organization that funds research into treating and curing SMA, and provides support to SMA patients and their families.[...]

Laura asked me to post the following link to an interesting article on gene therapy forwarded to her by Jessica Bolton (Thanks Jess!). Gene Therapy will likely be the next FDA approved treatment for SMA and this gives a little insight into a recently approved treatment for genetic blindness out of Philadelphia and the positive outcome from the research they did. [...]

Thank you all for the follows and kind words! We are lucky to have such an encouraging group of friends and family following Ava’s journey.
Ava had a great few days and yesterday worked on sprinting (breathing without her ventilator support) for 30 minute increments. She was able to maintain good oxygen levels during the sprints so over the next few days the doctors will combine sprinting with weaning the support settings on the machine. Ideally Ava will get back to not needing any breathing support at home or just needing it at night for the time being.
Dan and I were able to take a tour of Children’s Specialized Rehab facility in New Brunswick yesterday. Potentially we can discharge from the PICU directly there where Ava can receive physical, occupational and respiratory therapies daily. We are optimistic that between the Spinraza dose and daily therapies Ava will get strong enough to fight through respiratory season and move more and more.
More positive updates to come 😀[...]

Hi everyone,

Dan and I wanted to create a space where we could provide regular updates to friends and family who want to check in and find out about Ava's progress. It is difficult for us to remember to share (and repeat) Ava's struggles and care with everyone, and even to remember what details we've shared last so we know where to continue. We appreciate everyone's concern, and want to make sure everyone has a chance to hear what is happening with Ava. To bring everyone up to speed, I'll start at the beginning.[...]