Myositis Walk

Please join us for our Myositis 5K Run/Walk/Wheel for a Cure!
The event is quickly approaching and will be held on Saturday, October 15th.
We really hope to have your support, because we need a cure!!

Since Myositis is a rare illness, funds can be hard to come by. All proceeds from this event will be donated to the Myositis Association and the Johns Hopkins Myositis Center to support critical research, patient assistance, awareness, and advocacy efforts.

Please help us to Fight Myositis by participating in the event or donating to the cause! Donations or registration fees can be made online by clicking on the link below.

http://bit.ly/MyositisWalk2011


WALK DETAILS

When? Saturday, October 15th 2011 from 9am - noon

Where? Centennial Park- 10000 Route 108, Ellicott City, MD 21042

What are the walker registration fees? Adults $25.00
Children under 13 $15.00
All registrants will receive a t-shirt.

DONATION & REGISTRATION FEES can be made on through the link above via CREDIT CARD. Once on the fund raising site, click on the link at the bottom of the page which reads- "Donate to this Campaign." However, if you plan to participate in the event you must ALSO complete the EVENT REGISTRATION FORM, which is located at the bottom of the page as well. Once the form is completed, please email it to jennysilverb@yahoo.com or mail the form to Jenny Leonard, 1 East Chase Street, Apt 405, Baltimore, MD 21202.



Thank you for your support and we look forward to seeing you there!!

In Remission/Off Meds

I can officially report that I am off Prednisone and am still in remission since my HiCy treatment 2 years ago.
I have recovered a remarkable amount of muscle strength and continue to target the areas where the most damage occurred- hamstrings and glutes.
I am so thankful for the quality doctors and care I received at Hopkins. Myositis patients now have one more option for treatment.

Waterskiing

After many failed attemps, I finally discovered a system of holding on with one hand and pushing off one thigh to tuck and get vertical. I was yelling and laughing so hard I fell soon after.

On the slopes

I went down-hill skiing in March! I cannot express with words how wonderful it was to go fast at something, anything...going fast is something this thrill-seeker stuck in first gear has surely missed. I was a little awkward walking in the boots, but then after a few runs, muscles loosened up and I was doing the blue trails!

Finally

CK is down a bit more and I am officially in the normal range at 224.
I have not seen a lab printout without an H for High next to CK in 3 1/2 years.

One Year Later - Strength Comparison

CK Down Again

CK is 252 (38-234 is normal)

2 Years ago it was around 8,000

Now we can start tapering the 10mg Prednisone and hopefully get off it altogether.