Third time’s the charm! Our kick off meeting will take place at Seattle Children's from 2-5pm on January 20, 2013.
Details are as follows:
MEETING DETAILS:
Who: DMD Families(anyone 16 years and older for those wanting to bring their sons), researchers, clinicians, friends, PT’s, OT’s
Where: Children’s Hospital Wright Auditorium
When: January 20th, 2013 -- 2:00pm – 5:00pm
Coffee, tea, soda, water and mid afternoon snacks will be served
Our sincerest apologies to those who showed up at the meeting in November and didn’t receive our cancellation. Our office was knocked offline due to Super Storm Sandy.
Please RSVP for this meeting by replying to this email with how many will be attending. We’d like to have a proper headcount. We hope to see you on the 20th
Happy New Year!
Best,
Ryan
Ryan Fischer Director of Outreach and Advocacy 401 Hackensack Avenue, 9th Floor Hackensack, NJ 07601 t. 201-250-8440 f. 201-250-8435
Love, Ruth Griffith (lives in Bothell, the other person that showed up for the FACES in November).
i forgot lynn yes mom for christmaes you know i do h ave everthing i need but i might be getting some braking dawn stuff you the vimpire movie. kimmy. ps my i add you as a friend thank you
hey lynn how are you. i am doing very well . i just lost over 30 pounds and walking without the walker maybe70 steps that a big deal to me. i have loose muscle which cause my joints to pop i have 14 sugeris and deal with anixty pstd. but that does not get in the way with me living. thats my goal is live for today. so my band new goal is walk with my friends at the rock and roll half marathon. in seattle and yes i will do in my walker and then i wil have to rest bit in my wheel chair. kimmy.
hi lynn how are your son is just to cute how is he doing. my name is kiimy watters and i live in tacoma and very good friends with mindy colby her son is name jake. i just wanted to induce my slef . ps email when you can. kimmy
Lynn - we are from Seattle WA - and I just sent you a friend request. I wanted to let you know that we go to Cincinnati to Dr. Wong from here. We are also are in the processing of setting up a relationship with local Children's. I asked both docs here and there if they would work together and they agreed to. Too soon to say how it's working but hopefully, it will. Just wanted to through that out there. We'd love to get together once you are all settled - our guy is 8 years old and we could tell you all about the PNW. Thanks Char here is by email - charlatte2@comcast.net if you want to email me at home. At work now.
Hello Lynn, We emailed awhile back regarding a compassionate reassignment. My husband and I are at Fort Hood and want to get the boys in with Dr. Wong. I let my husband know that you were able to get yours approved and he wanted to know if there's any way we can get a copy of the packet submitted. Of course we'll have our doc letters but we can also just change the names and stuff on the 4187 and hopefully get ours approved as well. Let me know if that's possible..thanks!
How is the planned move to colorado going? Please let me know if you have any questions. Dr. Apkon at Denver Children's will take great care of your son and I am sure the presciption would not be an issue. She prescribes it for many boys here in Colorado.
Please keep in touch when you move to CO. I want to know how things are going.
Take care,
Christine
At 11:06pm on September 15, 2008, Lynn Bartels said…
I don't know right now I am being that stubborn 2 year i dont wanna go. It has been a long deployment, He has been gone it will be 14 months byt he time he gets back. I know I am being stupid about it I just don't want him to drop me off at carson where I have no friends and be like see ya in a year. I need to stop whining other people have it worse off I know this logically. His chain of command has been interesting they were great about getting us a one level home. He switched from one company to another half way through the deployment and I took over as FRG leader a few months ago so it has been busy lol. Tricare has been a pain in the something. Just everything, from drs who don't even know what muscular dystrophy is to having to argue to get medicine its silly. It has gotten better though. My son who has DMD is 7 almost 8 he is ambulatory my youngest is 7 i almost typed 78 lol.
They are crazy boys I tell you. they are both good boys though.
Do you live on the post down there? I think they do need instant messenger. I was insnely happy to see another military family on here, I was talking with Ryan , and Kim at the conference and I commented that even though we are all in this large group sometimes it feels lonely with the military.
wow..fort carson..i hear everybody loves it there. your in luck too..my best friend andrea lives in arcada which is not to far from fort carson..she has two boys with DMD. she's a great person and she can give you tons of advice and a shoulder to lean on (me too by the way!..lol) i've never been to colorado but im heading there to spend christmas this year with her. how did you survive the deployment?...lol..is he on a 12month or 15month deployment? how supportive has his chain of command been? and what kinda issues have you had with tricare? and how old did you say your sons were? i know one has dmd..is he ambulatory? wow...i sure fired alot of questions...lol...sorry!
Hello there Lynn. I am sorry I haven't responded to you on the military family group yet. I've been so busy lately that I haven't even been on here. I am soooo relieved SOMEBODY military is out there with Duchenne boys. I tell you what..I was beginning to think I was the only one. When is your husband coming back? Do you have any help?
Found Shrewsbury on the map, although I can't determine how close it is to Crickhowell but if/when you have the chance to travel there with your friend-go for it! Maryland is green like Wales, unlike the California desert area where we live. But, I can see why your friend wants to get back there.
Isn't it shocking, about having to explain to a nurse what DMD is? Actually, my friend I wrote of previously, from Wales, is an trauma nurse who has known my son for the past 6 years and never saw anything wrong with him!! She has been by my side throughout this ordeal and subsequently informed herself and others in her profession about DMD. Then there are the ones who "know" about DMD and do obscure things in front of our sons like make a loud announcement "he's STILL walking"!! I had an ortho do this a few weeks ago and had to haul him aside and set him straight on what not to say in front of my son.
The job never ends!
cheryl
My son, Alexander is going to be 10 in a few days. So many things to worry about with DMD boys. I am hoping his 10th celebration doesn't bring sadness. I read of this happening with DMD parents when they know their sons are "closer" to the end instead of simply growing up. We just found out about his dx less than a year ago so we haven't come up against the emotional birthday thing yet.
How old is your son?
Where does your friend live in Wales? We just returned from there a few weeks ago. We were in mid-Wales, LLangynidr which is near Crickhowell. I have a friend from there and we met her at her home there (she lives here in the u.s.). We were taken by the beauty of Wales. So many shades of green, such lush landscaping. Does your friend live nearby where this poor lad is from? I get the impression the lack of good, solid ER services leads to death more often than we realize for our sons. There is too much to know and keep up on, which makes it difficult.
I am very relieved to hear your son is doing better. I hate to hear of another one going the way of the Welsh boy.
I read your comments regarding ER rooms and stomach things. How is your son doing today? I hope he is recovering nicely. Was your experience at the ER in your area ok? Did they throughly check his entire body? The reason I am asking, really not trying to be nosy, but the little lad in Wales who passed away this spring from a sudden peptic ulcer has gotten my attention. I don't want that to happen to anyone else's son...I could be wrong...but my understanding is steriod use and stomach problems can easily go misunderstood.
Your son is the same age group as mine. I hope all is well for you guys.
cheryl
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Lynn, I just got this in my email:
Dear All,
Third time’s the charm! Our kick off meeting will take place at Seattle Children's from 2-5pm on January 20, 2013.
Details are as follows:
MEETING DETAILS:
Who: DMD Families (anyone 16 years and older for those wanting to bring their sons), researchers, clinicians, friends, PT’s, OT’s
Where: Children’s Hospital Wright Auditorium
When: January 20th, 2013 -- 2:00pm – 5:00pm
Coffee, tea, soda, water and mid afternoon snacks will be served
Our sincerest apologies to those who showed up at the meeting in November and didn’t receive our cancellation. Our office was knocked offline due to Super Storm Sandy.
Please RSVP for this meeting by replying to this email with how many will be attending. We’d like to have a proper headcount. We hope to see you on the 20th
Happy New Year!
Best,
Ryan
Ryan Fischer
Director of Outreach and Advocacy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
t. 201-250-8440 f. 201-250-8435
Love, Ruth Griffith (lives in Bothell, the other person that showed up for the FACES in November).
i forgot lynn yes mom for christmaes you know i do h ave everthing i need but i might be getting some braking dawn stuff you the vimpire movie. kimmy. ps my i add you as a friend thank you
hey lynn how are you. i am doing very well . i just lost over 30 pounds and walking without the walker maybe70 steps that a big deal to me. i have loose muscle which cause my joints to pop i have 14 sugeris and deal with anixty pstd. but that does not get in the way with me living. thats my goal is live for today. so my band new goal is walk with my friends at the rock and roll half marathon. in seattle and yes i will do in my walker and then i wil have to rest bit in my wheel chair. kimmy.
hi lynn how are your son is just to cute how is he doing. my name is kiimy watters and i live in tacoma and very good friends with mindy colby her son is name jake. i just wanted to induce my slef . ps email when you can. kimmy
How is the planned move to colorado going? Please let me know if you have any questions. Dr. Apkon at Denver Children's will take great care of your son and I am sure the presciption would not be an issue. She prescribes it for many boys here in Colorado.
Ang :)
Please keep in touch when you move to CO. I want to know how things are going.
Take care,
Christine
They are crazy boys I tell you. they are both good boys though.
Do you live on the post down there? I think they do need instant messenger. I was insnely happy to see another military family on here, I was talking with Ryan , and Kim at the conference and I commented that even though we are all in this large group sometimes it feels lonely with the military.
Found Shrewsbury on the map, although I can't determine how close it is to Crickhowell but if/when you have the chance to travel there with your friend-go for it! Maryland is green like Wales, unlike the California desert area where we live. But, I can see why your friend wants to get back there.
Isn't it shocking, about having to explain to a nurse what DMD is? Actually, my friend I wrote of previously, from Wales, is an trauma nurse who has known my son for the past 6 years and never saw anything wrong with him!! She has been by my side throughout this ordeal and subsequently informed herself and others in her profession about DMD. Then there are the ones who "know" about DMD and do obscure things in front of our sons like make a loud announcement "he's STILL walking"!! I had an ortho do this a few weeks ago and had to haul him aside and set him straight on what not to say in front of my son.
The job never ends!
cheryl
My son, Alexander is going to be 10 in a few days. So many things to worry about with DMD boys. I am hoping his 10th celebration doesn't bring sadness. I read of this happening with DMD parents when they know their sons are "closer" to the end instead of simply growing up. We just found out about his dx less than a year ago so we haven't come up against the emotional birthday thing yet.
How old is your son?
Where does your friend live in Wales? We just returned from there a few weeks ago. We were in mid-Wales, LLangynidr which is near Crickhowell. I have a friend from there and we met her at her home there (she lives here in the u.s.). We were taken by the beauty of Wales. So many shades of green, such lush landscaping. Does your friend live nearby where this poor lad is from? I get the impression the lack of good, solid ER services leads to death more often than we realize for our sons. There is too much to know and keep up on, which makes it difficult.
I am very relieved to hear your son is doing better. I hate to hear of another one going the way of the Welsh boy.
Stay well,
cheryl
I read your comments regarding ER rooms and stomach things. How is your son doing today? I hope he is recovering nicely. Was your experience at the ER in your area ok? Did they throughly check his entire body? The reason I am asking, really not trying to be nosy, but the little lad in Wales who passed away this spring from a sudden peptic ulcer has gotten my attention. I don't want that to happen to anyone else's son...I could be wrong...but my understanding is steriod use and stomach problems can easily go misunderstood.
Your son is the same age group as mine. I hope all is well for you guys.
cheryl
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