Monday, May 21, 2018


Just 21 days into Myositis Awareness Month and I am blown away by the support that I have received from friends. My goal was $380 and we have raised over $800!

I wanted to take a moment to explain why I am asking to push as far as we can past my initial goal amount.

Here is a real view into life with dermatomyositis (DM); one that I don’t generally talk about.

What you see in this photo is the bill that my husband and I get 4 times a year. What you see on this bill is ONE Rituxan infusion at $32,500. 

After insurance (of which we have an excellent plan), it costs us about $4,000 a year to receive the medical treatment that has been saving my life for the past 3 years

This is on top of the specialists that I see about once a month with a $50 co-pay, and the several life-saving medications that I take, some of which are not fully covered by insurance. I will typically have an MRI as well to monitor activity in my muscle tissue, which generally runs about $600-$800 per scan after insurance.

I am sharing this because I know that we are tremendously blessed, and it breaks my heart to know that there are families out there that cannot afford to try new treatments that could potentially better (and extend) their lives.

Before I tried Rituxan and got the right combination of medications in my system, I felt like the best part of my life was over. 
I read it every day in my support groups; people giving up, feeling like they will never have the life that they want.

Cost just shouldn’t be a factor in getting the treatment that you need to live your life and be the healthiest version of yourself.

I chose Myositis Support and Understanding as the recipient of my fundraiser because along with working hard in Washington and getting dollars to research, they help to financially support families that need it to get the treatment needed to save their lives.

Click here if you would like to donate! 

Thank you so much for taking the time to learn more about myositis this month! 
I am so grateful for your support and care for me, my family and the myositis community!