I've had a crazy school year with Francis, but other than that everything is great. Hope you have a safe trip and that it is productive. You will be in my prayers this weekend and next week. To bad Dr. Wong is not in Buffalo, NY you could have stoped in to see us, I won't be going to the conference this either even though I would love to. To much going on, but at least going to see Dr. Wong might make up for it. God Bless,

Suzanne

Hi Beth,

Hope all is good with you and your family. I just thought I would say hello. I think I saw somewhere along the past year you said you were taking Andrew to see Dr. Brenda Wong? I was wondering if you had gone there or when you are going there. If you have how did it all go? The reason I ask is we will be taking Francis to see Dr. Brenda Wong as well on August 11th, 12th & 13th. Just wanted to know what to expect.

God Bless,

Suzanne

Please join our San Francisco Bay Area Families group.

Greg

Hi Beth!

When I first saw your name I was like that name looks familiar. Good to hear from you. You searched me just in time I had just joined. Keep in touch!

Tracy

Beth,

Let me know how everything goes and if there is any information I can help you with for your trip. I will keep you posted how it goes for NIck when he starts his growth hormone.

I hope all is well.

Happy holidays!

Julie

Hi Beth,

Happy holidays! I hope all is well. I have not heard back from you. I will try to call some time soon. The holidays have been real busy for me right now.

I did want to let you know about Leslie Guzman. She has joined the PPMD website. I do not know her personally but have heard good things about her. She helps spanish speaking families. I thought of your friend you had told me about a month or so.

You take care and let me know how you and the family are doing.

Julie

Hey Beth,

Saw your post on Mindy's site and thought I would check in and see how you are doing.....Julie

Beth,

I spoke to your Rep's L.A in DC today. I told her about your meeeting with him and his commitment to sign on. She said she would check with him on this. She said you and I could call back and talk to her about the status. She is in DC and her name is Celia Daly. I plan to call tomorrow. She was trying to reach him for an answer about his support on the bill.

Call me when you can.

Take care,

Julie

Beth,

Here is Lauren from Cornerstone's's e-mail address and Ryan's:

lackil@cgagroup.com

Ryan@parentprojectmd.org

Send them an e-mail and let them know about your meeting today and how it went.

Let me know if you need anything else.

Thank you for all you are doing!

Take care,

Julie

Hi Beth

Thanks for your comment on my page. It is wonderful to meet all of you guys from all over the world. May God really bless your family and all other families going through this.

Jan Ferreira
South Africa

Hi Beth,
Hope you and your family had a wonderful weekend? Do you have any questions for me regarding your son with DMD?Since I have been down that road,I'm the perfect person to ask,so feel free to ask me anything.

Thanks,
Greg

Unfortunately, I did not get to go to conference. I hope to be able to raise the funds and go next year. Actually I just heard this song for the first time about two weeks ago and it was introduced to me by Karen Barnett. So, then I looked for this song and this is what I found. Great, huh and just hits the heart right where it counts.

Hi Beth,

Sorry it took me so long to get back to you, we just returned from vacation and were not able to go to the conference. How was it? I will look at the old site for your message.

bye for now,
cheryl

Hi Beth,
it was great to meet you too!
In health and happiness,
Rebecca

Beth,

Let me know how it goes with obtaining your congressman's signature.

The conference was good in a lot of ways. My mother in-law is fired up about getting her Senator Harry Reid to sign the MD Care re-authorization Act. So, we shall see about that one and hopefully others will work on obtaining signatures too.

Take care and looking forward to meeting up again!

Julie

Hi Beth - Thanks for contacting me today. I also joined the CA group today. I haven't been on in a while so I didn't know it existed. We are in Northern CA, near Oakland/SF, about 20 miles east. Wow, I have not met anyone who's son has a similar deletion. Our DNA said that he is missing 8-19. Alex was diagnosed in Nov. 04 at age 5. He was a late walker (age 16 months) and met alot of milestones late, but there was no major issues going on. He is getting around great still. He is very uncoordinated and can't play sports or ride a bike, but he walks and runs great. He rarely falls or trips...maybe once a month. He tires easy. We got him a motorized scooter 1-1/2 years ago for long trips. That helps alot. We have a pool and he just learned to swim this summer. He was fearful of the water....He sees a pediatric cardiologist annually and his heart is doing great. He saw Dr. Wong for the first time last July. He is going back next week with my husband. He is on 22 mg. of deflazacort per day for 3 years now, ace inhibitor for 1-1/2 years and metadate (for focus issues) for 1-1/2 years. I know this is alot of info crammed in message. Call email or call me to discuss further. I would love to know more about your son. I must say it is encouraging to know your son is still walking. Now that Alex is about to turn 9, I am so scared....Thank you and I hope to hear from you soon. My home email: kim@manda.net

Hi Beth: I am so happy to have met someone who lives so close! I'm glad you got home okay...I was so tired too, even more than usual!!! Lets make plans soon to get together.

Kim

Thanks, Julie!
I'm glad to have met you and Nick, too. I know we will be seeing more of each other!

Beth