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!!
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 (email@example.com)
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...
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!
me alegra mucho saber de vosotros, , estamos participando en el estudio del ptc 124, de echo volamos el sabado 18 de julio a philadelphia y estaremos alli hasta el 25., el lunes 21 volaremos a gainsville , florida para la prueba de Mri y tendremos visita con el Dr. Finkel el miercoles.
el jueves le hacen la biopsia y volvemos el sabado a españa.
no recuerdo donde vivis vosotros pero si fuera posible nos encantaria veros.
mi hijo esta muy bien, no he notado cambios espectaculares, pero lo que es seguro es que no ha empeorado nada , y eso con 11 años ya es un exito.
puedo recibir tu contestacion en mi mail firstname.lastname@example.org o puedes llamarme a mi movil 609237117.
dime como va tu hijo, notas mejoria? espero que si, hasta pronto,
Hey, sorry we will miss you sunday at the meeting. Would love to do a bbq with everybody. Let us know when and I can help with whatever you need. We aren't doing any big vacations this summer just some day trips with the kids so our schedule is pretty free in July. Oh, except July 26-27th Mike is doing a triatholon for Ryan's Quest in Jersey. Keep me posted. Maybe you and I could meet sometime before July if you are interested?
Hi, so sorry I haven't responded to you. We changed our email's and I haven't been on PPMD in a while. Are you going to the PA meeting at the Quakertown airport? Would still like to set a date to get together if you are up for it.
So you live in Downingtown not that far from Quakertown. I believe we were at the MDA walk in November together and never met. Michael was just diagnosed in May and I believe I am finally coming out of my denial phase and entering reality. He started wearing the night splints which has been a huge wake up call for me even though we have been doing therapy since 14 months old and stretches since we were diagnosed. Anyway. was wondering how your boys are doing and well how you are doing with all of this. Just had a baby on Christmas Eve little girl Natalie so now starting to adjust to life with 2 kids. Would like to get together if you guys are up to it. Oh, are you going to Atlanta for the conference? I won't be able to make it with the kids but Mike is going solo this year. HOpe all is well.
I have to admit to being jealous of everyone who has a premature stop. I am happy for all of you but a little sad for us. Liam has a deletion of 8 -16, so as far as exon skipping he's #9 on a list of about 120 combos to be skipped, so who knows. i hate to put all my hope in one basket, it's a very fragile thing. Liam has all the learning and behavior issues associated with DMD. it was so bad that we took him to Texas Childrens for a full eval with Dr. Poysky. he's made tremendous improvements. He was dx with OCD, Tourettes and ADHD. those seemed to make more sense to school then all the lit on DMD i was clobbering them with, so they are doing a really nice job with him. our teachers and aids are amazing (he does have a full time aid) and they work really hard for him. as a parent advocate you have to find a balance between being feared and loved at school. as a teacher you probably know that. as far as cincy goes, we are supposed to be going back in june but i have to change our appointments. normally, i take what i can get where they are concerned but this time it conflicts with marine biology camp in maine. jack (my oldest) has been waiting for two years to go to this camp, you have to be 10, and i promised him he could go. he's given up a lot and put up with a lot in the last few years that i can't possibly take this away from him. it's always give and take isn't it?! the only real comfort i've found the last two years has been here, with other families. when do you go back to cincy?
it took me awhile to realize that i'd been talking to your husband via email a few weeks ago (i'm not that bright!). somehow, i found a link to your site and you posted a link to our site so i emailed to paul to find out how he found it etc ... it was really nice to meet you and i enjoyed talking to you. i feel like dc is one of the most productive, and theraputic, days of my year. in a disease where we have so little control and it seems like so much of what we do everyday doesn't matter, it's nice to do something and actually see the fruits of your labor. i'm really glad to have met so many supportive and active parents, i think i would be lost without them. it's too bad you won't be able to make conference this year, do you think you'll be able to make advocacy next year? how are your boys doing?
un placer hablar contigo,ademas en español que me resulta mas sencillo.
yo estare en julio en philadelphia para lña reunin de parents project, me encantara conoceros. este año no vendra mi esposa luisa a la reunion, pero espero que tendremos que volver muy pronto para continuar el ensayo clinico y tendremos mas tiempo para conocernos.
si necesitas algo de nosotros no dudes en ponerte en contacto.
mi telefono es :
+ 34 609237117
sludos para toda la familia,