Joanna Johnson's Page

Hey, haven't been on here in a while but just wanted to touch base and see how things are going with you and your family. Hoping all is well and thinking of you guys.

oh, and thanks so much for the compliment about the article. I was so nervous about it. I am certainly not a writer and really wanted to use it as an opportunity to spread awareness about DMD. Glad you liked it!!

Joanna,
I am hurting too about the trails, even though Riley wasn't in them, my heart is breaking for our DMD community and the families this has directly affected. I am keeping you all in my prayers to get through this and that we will hear some good news about it soon. Thanks for the offer for the book, I am a therapist and have worked with with children, and even though I do not have that book, I have worked with Riley on dealing with his anger. It is just very uncharateristic for him and I have looked at all external factors (ex. school) to determine if they are playing a part. It doesn't seem that anything else is going on which lead me to question the steroid. I actually took him of of the protandim the day after I posted about his behavior and it has already improved!? I did realize there was a correlation between his behavior and when he started the protandim. i am not sure if this will be the answer, but I will definatly let you all know what happens after he is off for a while. Keep in touch and let me know when you get a facebook! lol!

Hi Joanna, first, your sons are adorable. Thank you for reaching out to me and for your kind comments about the article from the courier post. I was touched when the sports writer said he wanted to write this article. It was a great tribute to my oldest son, Ryan, and it was a great opportunity to spread some awareness of DMD in an unlikely place, the sports section. That is crazy that your sister's children were at the game the other night. It has been very exciting. They play again tonight so keep your fingers crossed. ;-) I can't believe that your niece is in the same school and grade as Eddie. The name Kahriger is very familiar to me. It really is a small world. Eddie's main doctor at CHOP is Dr. Bonnemann, however, we have seen Dr. Finkel. I am very pleased with them. Downingtown, PA is not that far away and I would love to keep in touch, especially since we have this Marlton connection!! Thanks again for reaching out. ~Kathy (kmckeaney@comcast.net)

Hey Joanna! Thanks for dropping me a line! I had a great time in DC...dinner was a hilarious! We had a crazy, hectic flight home and had to spend the night in memphis because our flights were delayed twice and cancelled twice! Good thing the trip was worth it because we were able to stay positive and just laugh about it. I tried to look for you on facebook...do you have one?

I've heard the 10% statistics from a friend from UK. They will probably make the % public at some point. Very sad news... Do you remember how much dystrophin was obtained in the previous phase of the trial? I remember reading those numbers but I have too many negative things on my mind now to remember...

Your boys are so cute. I love the blonde hair.

hi joanna - i totally understand, no problem. Our life is crazy & we are always juggling 2-3 sports, Levi's therapies, work & life in general. We are well & waiting for the big snow. My home number is 717-949-8334 or cell 717-821-5666. Cell is probably best. call me anytime, would love to catch up & see how the boys are doing:) enjoy the snow!

Completely understand it has been the same here. Very Busy! Hope to meet you tommorrow and Mike and I are coming to the race on Halloween can we still register? I will talk it over with you tommorow