I live in a great beach town in Southern California with my husband Scott, our awesome kid, Cooper and our dog Frosty the white lab who keeps us smiling a lot!
We are so fortunate to have friends, family and community that are so supportive. Because of this we were able to create www.CoopersCure.org
this past year. It's our little website that tells our story and leads people to PPMD.
The punk band Pennywise helped us get some attention and many local fund raisers continue to be offered because of this! Thank you Pennywise!
Through this horrible "thing" in our lives we have discovered how truly generous and kind people can be.
Name(s) of child(ren)/individual(s) with Duchenne:
WOW! I'm impressed with your site for Cooper. How old is Cooper ? How is he doing and is he on meds? My son will be 8 next month. He is in the second grade and on calcort. 18 mgs daily. Christian has a deletion of 51-55. How is Cooper handling all of this? Sounds like you're pretty open. My son knows he takes muscle pills, has to stay strong and one of the PT's mentioned to him that you have to stretch if you want to continue to walk...but he really doesn't talk about it. Not sure it's really hit him because he is still doing good. Have you attended conference? I went last year and I must say it did give me hope...but time is ticking..I hate thinking that another year just flew by. Is Cooper your only child? Sorry so many questions. We go to Dr. Wong in Cinci once a year..Love her! We go locally in between. I would like to have a fundraiser but have no idea where to start. It's just all so much.
Hello, first I want to say I met your husband in Washington DC. He did a great job and has a huge heart. His thoughts were focused on his family and he represented Cooper so well. The California people learned about Pennywise and how great they are to support you guys! Please give my regards to Scott. Let him know the office that him and I went to that already had a meeting with someone (we don't know who) but agreed to keep our meeting finally signed onto H.R.5265. The office was my sister's Rep and after several e-mails and phone calls and insistence the Rep finally signed, I think it was late June.
Cathy, join the California group. I think you will find good information and resources.
denise and i (and germs...errrr kids) are coming up on saturday. we are staying at Paradise Pier. are you and scott? what about the pasta dinner...will you guys be at the dinner again this year?
let me know and we can all get together. dunno about you, but i'll have a cooler full of (looking over my shoulders) beer and champagne at our room for after the run...the pool is gonna be a good place to be at on sunday. hee hee...
Cooper's Cure is amazing. Thank you for sharing. I would love to do what Cooper's Cure site is going and get more awareness here in Burbank but I am not sure how to do all that. Yes, I would love to get together some time. I wish we could be there to support you on Sunday but I am not sure if that can be possbile. Perhaps could you let me know the details?
Welcome Cathy to PPMD Community. We were just down in Hermosa Beach last week at the Shore Restaurant for the MDA Executive Lock Up. It was fun but we did not have time to stay and visit the pier or anything else.