Hello friends and family,
Well, it's been an interesting year to say the least. We were very concerned when COVID-19 began due to Ava's compromised immune system on her current medications. Her doctor wanted to start her on a new immunosuppressant because she was not fully maintaining between her IVIG infusions, but he decided to wait on that since it would have further compromised her immune system. We decided to continue treatment as is for the time being to see what would happen.
Today was IVIG day. The good news is that it had been five weeks since her last infusion, and she maintained well. Her doctor said this marks the first time since starting treatment that we can say she has actually made progress in terms of her body being able to maintain with less medication in her system! Praise God! We will now wait six weeks before her next infusion to see if this trend continues.
On another note, we are participating in the July 4th Cure JM Walk Strong Across America fundraiser. This is an important event that raises funds for Juvenile Myositis research, which is seriously lacking due to the rare nature of this disease. The walks they hold each year are their biggest fundraisers, which have been threatened by the COVID-19 pandemic.
We are rising to the challenge to encourage people to support Cure JM research by walking with us on or before July 4th - from the comfort of your home, in your yard, or around your neighborhood.
The COVID-19 crisis has shown us that now more than ever, we need to move Juvenile Myositis research forward. COVID-19 has increased the vulnerability of children and teens with JM who receive treatments that suppress their immune systems. This is why we are committed as ever to our mission to find better treatments and a cure.
All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis.
Please consider joining us by donating to Team Ava today and sharing our Facebook Team Page.
Here are the links!
https://www.facebook.com/donate/837683523423519/
http://events.curejm.org/site/TR/Walk/General?px=1006674&pg=personal&fr_id=1264Thank-you all for your support!
Love,
Jeff, Jessica, and Ava
