Julie, I thought I would start a discussion on this topic instead of adding comments to the main CA page.

---------------------------------------------

Hi,

I don't know everyone who will be attending the conference in July from California but I would like those who are attending to try to find time to get together and we can discuss standards of care in California. I would also like to make sure those who do not attend have the information we discuss. I will volunteer to keep our California families informed.

So, for those who are interested lets post who is attending and what day you will be coming in and what day you will be leaving. Hopefully, we can figure the best time to meet and have discussion.

All the best everyone.

Julie, Sacramento, CA

Views: 40

Replies to This Discussion

We are supposed to be going...all 4 of us...i will update later.
I really wish that we could attend this year, but with a recent visit to Cincinnati behind us and another one planned in December, two long trips with a 4 year old and a baby under the age of 1 are enough. :) We really do hope to attend next year though.
Hi you guys,

Paul and I won't be able to attend this year and feel terrible about missing things we need to be involved with. But we have already paid for vacations tickets at that same time. I do hope I can be on your list of people Julie, to stay in touch with regarding all the stuff we will be missing.

cheryl
My husband Evonn and I will be coming to the conference late Wednes PM and staying until Monday. I would love to have a CA gathering of some kind. We're staying at the hotel but someplace else to meet would be fine too.For those of you not going we could use this forum to blog it a bit for you if you want.
As a side note is anyone sending their son this year to MDA camp in Occidental (SF Bay Area)? I'm looking for a buddy for my son to meet before camp. Milo's 7 and 1/2 and it's his first overnight away from home.
Rebecca in Berkeley
Hi,

I am still learning how to move around this website so please forgive my late response.

Cheryl, yes I will keep you and Paul updated. The link to the California families may be a real good way to do this.

I believe we can help push research, standards of care along much faster if we work together. PPMD started out with a small group. One of Pat's former staff, Melissa, told me how she recalled, folding flyers at Pat's kitchen table. Melissa was a friend of Pat's daughters and no longer works for PPMD. I have no doubt she still supports PPMD in some way.

Rebecca, the MDA camp, that is the one SF MDA puts on right? When is it? Do you go to the MDA clinic on California street in SF? Forbes Norris I believe it is. Nick has no plans for camp at this time. I am really looking froward to meeting you in person. Anneliese, Raybear is the one who first put me in contact with you. Are you still in contact with her? Raymon is her son. He is the same age as my son, 16 years old.

Take care,

Julie
ok, we got our itinerary. all 4 of us will be going.

Arrival: 3:00 PM EST Wednesday, July 16.
Depart: 4:10 PM EST Sunday, July 20
Hi All,

We too will be missing conference this year. Two trips to Cincinnati and 4 surgeries so far in 2008 for our daughter has left the banker broker. Hopefully next year.

Thank you Julie for volunteering to keep us informed. I look forward to hearing about conference.

Traci, Cardiff, CA
Flying out in an hour to the conference . . . hope to meet some of you when we get there!
Rebecca
(and husband Evonn)
HI all - I just joined the CA group. Obviously, we did not attend the conference. With twins under the age of 2, and no family here to help, I couldn't swing it. I would love to get an update. I feel out of touch a little bit with research etc. I want to get back involved. Also, Alex and my husband are going to Cin next week to see Dr. Wong on July 30-31. Keep them in your prayers. Alex (age 8) hates needles and he is freaking out about giving blood...I hope that is the largest hurdle we must get over.
Thanks everyone....

side note: Julie and Rebecca and any other Northern CA moms or dads ...we should find a location for us moms to meet for a few hours on a Saturday and talk ....I will swing it if we can get childcare etc. Let me know.
Kim,

This sounds real good. I would love to get together soon and talk about things. I have a few things coming up in the beginning of August and then after the week of August 15th I think I am good.

I met Rebecca and her husband at the conference. We were trying to find Ryan at the end of the conderence to see about getting a binder. I was not able to find him and don't think he was around. We wanted to get you a binder as requested. So, I had no luck.

Lets talk more about getting together soon.

I was traveling with my son and mother in-law so I was unable to participate in a lot of the conference like I had original planned. I was spending time with old friends, made new ones and tried to help others who needed it.

I wanted to attend the supplement meeting but did not. I was told the woman who held the meeting was collecting data from all parent so she could provide feedback later on it. I gave her my e-mail address. She said she would e-mail me so I could send my list in to her. I will update all when she sends me an e-mail. I am hoping she will make this request thru PPMD so all will have the opportunity. I did suggest this to her.

Questions were raised on PTC 124 and when non-ambulatory would be allowed to participate. No answers were given. Questions were raised on if they are working on measurements for non ambulatory. I believe they are.

The conference part on Advocacy was informative. We just need to all push hard and if our House member has not signed on to work towards getting their signature. Send e-mails to friends and families asking for support so we can gain more support outside our district. Both California Senators have signed on. This is the one place where we can really help to make positive changes for our families and hopefully work towards getting a standard of care as well as research dollars. Anyone needs help on this...post here, contact Ryan. There is a lot of support for this.

Take care,

Julie

Kim Maddux said:
HI all - I just joined the CA group. Obviously, we did not attend the conference. With twins under the age of 2, and no family here to help, I couldn't swing it. I would love to get an update. I feel out of touch a little bit with research etc. I want to get back involved. Also, Alex and my husband are going to Cin next week to see Dr. Wong on July 30-31. Keep them in your prayers. Alex (age 8) hates needles and he is freaking out about giving blood...I hope that is the largest hurdle we must get over.
Thanks everyone....

side note: Julie and Rebecca and any other Northern CA moms or dads ...we should find a location for us moms to meet for a few hours on a Saturday and talk ....I will swing it if we can get childcare etc. Let me know.

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