Annual American Craniofacial Assn Meeting next mo. - Plagio Topic

[Guest guest]

Christie,

Where do you find all of this info? Are you on all the mailing lists? This looks very interesting. How hard do you think it will be to get all of the info after the meeting? This could really help some people in their appeals.

I wrote my Senator about the senate bill. I suggested they might want to include non-surgical treatment options too. He wasn't on the list of signers. I'll let you know if he responds.

Annual American Craniofacial Assn Meeting next mo. - Plagio Topic

Hi,I found out that there are some items of tremendous interest to Plagiocephaly on the agenda at the American Cleft Palate - Craniofacial Association Annual Meeting next month. Topics to be discussed/presented on March 20, 2004 are:STUDY OF FAMILY HEAD SHAPE: ENVIRONMENT VS GENETICSEVALUATION OF A NEW SEVERITY ASSESSMENT SCALE FOR DEFORMATIONAL PLAGIOCEPHALYDOES POSITIONAL PLAGIOCEPHALY HAVE A NEUROLOGIC BASIS?DEVELOPMENTAL DELAYS IN CHILDREN WITH DEFORMATIONAL PLAGIOCEPHALY: AN UPDATED REPORTADVOCACY FORUM- WHAT'S NEW, WHAT WORKS, HOW TO GET INVOLVED (Arthur Green, Esq., Energizing Parent Advocacy Efforts, Bill Seward, Director of Government Affairs, ASPS, The Childrens' Deformities Act and Tips for Talking to Your Senators and Representatives)Here is the link to the meeting page(if the link is two lines long you may need to copy and paste the entire link to your address bar to get directed correctly):http://www.acpa-cpf.org/EducMeetings/annualmeeting/2004/dayByDaySat.htmI hope the information presented will be shared; I'm extremely interested in all of the topics, especially the one on how to contacting our senators/reps to get the Children's Deformities Act passed. If I find out any follow-up, I'll post.Christie (Mom to Repo'd Remy)For more plagio info

[Guest guest]

Hi,

I found out that there are some items of tremendous interest to

Plagiocephaly on the agenda at the American Cleft Palate -

Craniofacial Association Annual Meeting next month. Topics to be

discussed/presented on March 20, 2004 are:

STUDY OF FAMILY HEAD SHAPE: ENVIRONMENT VS GENETICS

EVALUATION OF A NEW SEVERITY ASSESSMENT SCALE FOR DEFORMATIONAL

PLAGIOCEPHALY

DOES POSITIONAL PLAGIOCEPHALY HAVE A NEUROLOGIC BASIS?

DEVELOPMENTAL DELAYS IN CHILDREN WITH DEFORMATIONAL PLAGIOCEPHALY:

AN UPDATED REPORT

ADVOCACY FORUM- WHAT'S NEW, WHAT WORKS, HOW TO GET INVOLVED (Arthur

Green, Esq., Energizing Parent Advocacy Efforts, Bill Seward,

Director of Government Affairs, ASPS, The Childrens' Deformities Act

and Tips for Talking to Your Senators and Representatives)

Here is the link to the meeting page(if the link is two lines long

you may need to copy and paste the entire link to your address bar

to get directed correctly):

http://www.acpa-

cpf.org/EducMeetings/annualmeeting/2004/dayByDaySat.htm

I hope the information presented will be shared; I'm extremely

interested in all of the topics, especially the one on how to

contacting our senators/reps to get the Children's Deformities Act

passed. If I find out any follow-up, I'll post.

Christie (Mom to Repo'd Remy)

[Guest guest]

,

I just Google various combinations of searches all the time, because

I know there is interesting and helpful stuff out there waiting to

be found about plagiocephaly. I just happened upon this Association

meeting today, and was very interested to see the agenda. It would

be really helpful if their Advocacy Tips trickled down to parents'

support groups - we could be a real source of pressure on elected

officials and insurance, etc.

My thoughts on the Senate and H.R. bills are that the non-invasive

helmeting and banding treatment of plagio has completely REPLACED

surgical treatment, which is so fortunate for the babies. Since

this non-surgical, non-invasive treatment is so unique (and so

preferable) when it comes to treating a children's deformity, I hope

the law will be interpreted to include it. Would you let me know

what your Senator says about your letter? I'm extremely

interested. My personal story (no helmet/band or insurance issues)

won't help the cause, but I hope to get info together here at the

group for parents whose stories could really impact the passing of

these bills.

I certainly hope that we will be able to know the information that

comes out of this meeting. Perhaps publication of these

presentations will occur in trade publications after the meeting. I

also recognized some names in the presenters, and plan on emailing

them personally after the meeting occurs to see if there are any

upcoming publication of studies/discussions expected. I want to

know about the updated report developmental delays in plagio babies

especially, as well as all the other topics.

I added this meeting link to the LINKS section, AMERICAN ASSOCIATION

OF ORTHOTISTS AND PROSTHETISTS folder if anyone wants to refer to it

later.

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " Filyaw " <filyaw@b...>

wrote:

> Christie,

> Where do you find all of this info? Are you on all the mailing

lists? This looks very interesting. How hard do you think it will

be to get all of the info after the meeting? This could really help

some people in their appeals.

>

> I wrote my Senator about the senate bill. I suggested they might

want to include non-surgical treatment options too. He wasn't on

the list of signers. I'll let you know if he responds.

>

>

> Annual American Craniofacial Assn Meeting next

mo. - Plagio Topic

>

>

> Hi,

>

> I found out that there are some items of tremendous interest to

> Plagiocephaly on the agenda at the American Cleft Palate -

> Craniofacial Association Annual Meeting next month. Topics to

be

> discussed/presented on March 20, 2004 are:

>

>

> STUDY OF FAMILY HEAD SHAPE: ENVIRONMENT VS GENETICS

>

> EVALUATION OF A NEW SEVERITY ASSESSMENT SCALE FOR DEFORMATIONAL

> PLAGIOCEPHALY

>

> DOES POSITIONAL PLAGIOCEPHALY HAVE A NEUROLOGIC BASIS?

>

> DEVELOPMENTAL DELAYS IN CHILDREN WITH DEFORMATIONAL

PLAGIOCEPHALY:

> AN UPDATED REPORT

>

> ADVOCACY FORUM- WHAT'S NEW, WHAT WORKS, HOW TO GET INVOLVED

(Arthur

> Green, Esq., Energizing Parent Advocacy Efforts, Bill Seward,

> Director of Government Affairs, ASPS, The Childrens' Deformities

Act

> and Tips for Talking to Your Senators and Representatives)

>

>

> Here is the link to the meeting page(if the link is two lines

long

> you may need to copy and paste the entire link to your address

bar

> to get directed correctly):

>

> http://www.acpa-

> cpf.org/EducMeetings/annualmeeting/2004/dayByDaySat.htm

>

>

> I hope the information presented will be shared; I'm extremely

> interested in all of the topics, especially the one on how to

> contacting our senators/reps to get the Children's Deformities

Act

> passed. If I find out any follow-up, I'll post.

>

> Christie (Mom to Repo'd Remy)

>

>

>

>

>

> For more plagio info

[Guest guest]

Keep us updated Christie. Sounds promising.

Dustie

--- In Plagiocephaly , " redlocks2003 " <redlocks@d...>

wrote:

> Hi,

>

> I found out that there are some items of tremendous interest to

> Plagiocephaly on the agenda at the American Cleft Palate -

> Craniofacial Association Annual Meeting next month. Topics to be

> discussed/presented on March 20, 2004 are:

>

>

> STUDY OF FAMILY HEAD SHAPE: ENVIRONMENT VS GENETICS

>

> EVALUATION OF A NEW SEVERITY ASSESSMENT SCALE FOR DEFORMATIONAL

> PLAGIOCEPHALY

>

> DOES POSITIONAL PLAGIOCEPHALY HAVE A NEUROLOGIC BASIS?

>

> DEVELOPMENTAL DELAYS IN CHILDREN WITH DEFORMATIONAL PLAGIOCEPHALY:

> AN UPDATED REPORT

>

> ADVOCACY FORUM- WHAT'S NEW, WHAT WORKS, HOW TO GET INVOLVED

(Arthur

> Green, Esq., Energizing Parent Advocacy Efforts, Bill Seward,

> Director of Government Affairs, ASPS, The Childrens' Deformities

Act

> and Tips for Talking to Your Senators and Representatives)

>

>

> Here is the link to the meeting page(if the link is two lines long

> you may need to copy and paste the entire link to your address bar

> to get directed correctly):

>

> http://www.acpa-

> cpf.org/EducMeetings/annualmeeting/2004/dayByDaySat.htm

>

>

> I hope the information presented will be shared; I'm extremely

> interested in all of the topics, especially the one on how to

> contacting our senators/reps to get the Children's Deformities Act

> passed. If I find out any follow-up, I'll post.

>

> Christie (Mom to Repo'd Remy)