NDSC Conference

[Guest guest]

Bonnie from Long Island

Mom to -10, twins and (ds)-2 1/2

[Guest guest]

We are still going! We will be driving though!

Renae

mom to Brady 7w/cp and Lucas 5w/ds

NDSC Conference

> Has anyone heard if the NDSC conference will still take place? Are those

> who were going still going? I checked the website, didn't have anything

to

> the affect that they were cancelling it. I figure there would be lots of

> folks who would be flying to Colorado. All along we had planned to drive.

> Just hard to think of going at this time. God Bless everyone,

> Kelli mom to Austin 5 3/4 yrs.

>

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[Guest guest]

We are still going! We will be driving though!

Renae

mom to Brady 7w/cp and Lucas 5w/ds

NDSC Conference

> Has anyone heard if the NDSC conference will still take place? Are those

> who were going still going? I checked the website, didn't have anything

to

> the affect that they were cancelling it. I figure there would be lots of

> folks who would be flying to Colorado. All along we had planned to drive.

> Just hard to think of going at this time. God Bless everyone,

> Kelli mom to Austin 5 3/4 yrs.

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

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>

[Guest guest]

I called them yesterday and they are still planning to have it.

They said if anything changed it would be posted on there web site.

I am coming along with a friend. We have airline tickets, they won't

refund our money. We think we will go ahead and fly, it's a 12 hr.

drive.

Tena

On 15 Sep 2001, at 8:00, kelli brown wrote:

> Has anyone heard if the NDSC conference will still take place? Are

> those who were going still going? I checked the website, didn't have

> anything to the affect that they were cancelling it. I figure there

> would be lots of folks who would be flying to Colorado. All along we

> had planned to drive. Just hard to think of going at this time. God

> Bless everyone, Kelli mom to Austin 5 3/4 yrs.

>

> _________________________________________________________________ Get

> your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

I called them yesterday and they are still planning to have it.

They said if anything changed it would be posted on there web site.

I am coming along with a friend. We have airline tickets, they won't

refund our money. We think we will go ahead and fly, it's a 12 hr.

drive.

Tena

On 15 Sep 2001, at 8:00, kelli brown wrote:

> Has anyone heard if the NDSC conference will still take place? Are

> those who were going still going? I checked the website, didn't have

> anything to the affect that they were cancelling it. I figure there

> would be lots of folks who would be flying to Colorado. All along we

> had planned to drive. Just hard to think of going at this time. God

> Bless everyone, Kelli mom to Austin 5 3/4 yrs.

>

> _________________________________________________________________ Get

> your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

In a message dated 9/15/01 5:08:06 PM Central Daylight Time,

dfleischmann@... writes:

> Does anyone know of any other conferences being held in the next couple of

> months?

>

> Thanks-

> Debbie

HI Debbie

We have our state level DS conference going on Nov 9th (I think) I know its

when my sister is due with her 1st child.....in Nashville TN I'm hoping to

go but will miss it if I can witness the birth of this child Heehee

Kathy mom to Sara 9

[Guest guest]

In a message dated 9/15/01 5:08:06 PM Central Daylight Time,

dfleischmann@... writes:

> Does anyone know of any other conferences being held in the next couple of

> months?

>

> Thanks-

> Debbie

HI Debbie

We have our state level DS conference going on Nov 9th (I think) I know its

when my sister is due with her 1st child.....in Nashville TN I'm hoping to

go but will miss it if I can witness the birth of this child Heehee

Kathy mom to Sara 9

[Guest guest]

For those who were planning on attending, please consider donating your

registration fee to the NDSC. The NDSC is dependent on convention

registration fees to keep their organization up and running.

For those who still will travel to Denver, why don't you try to meet one

another and have your own get together? Tim will be in Denver at the same

time (different conference) and has no problem flying.

[Guest guest]

For those who were planning on attending, please consider donating your

registration fee to the NDSC. The NDSC is dependent on convention

registration fees to keep their organization up and running.

For those who still will travel to Denver, why don't you try to meet one

another and have your own get together? Tim will be in Denver at the same

time (different conference) and has no problem flying.

[Guest guest]

>

>

> Is anyone going to the NDSC conference in Denver? I'm planning on it

> and would love to meet some of you all.

>

> Debbie

> Mom to Caitlin

I'm going and will be bringing . He has never been before. A

friend of mine is coming also and will be bringing her son, he is 20...I

think.

Tena

[Guest guest]

HI Debbie-

Can you tell me when the NDSC Conference is going to be? I'm pretty sure

that it is towards the end of August. I live in Southern California but

will be visiting my father who lives in Boulder from August 18-23. So, I

might be able to attend- I went to the NDSS conference last summer in San

Diego and LOVED it! I'm glad to hear that this one is cheaper because

the NDSS conference was really expensive!!!! $450 for my hubby and I

both to attend. THANK GOODNESS for funding (>:

Thanks in advance for the info.

Kriston, Mom to Hunter, 3 1/2 years old and 4 others

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[Guest guest]

Hi, Kriston-

The conference is 23 -25 August. I really hope you can make it. Chris

Kliewer is one of the keynote speakers and is an absolute wonderful,

brillant person. He is so dedicated to people with DS and will be one of

those that will change the world. I've never heard him speak, but have

talked with him by phone and email.

I think we should all try to get together while we are in Denver.

Debbie

Re: NDSC Conference

HI Debbie-

Can you tell me when the NDSC Conference is going to be? I'm pretty sure

that it is towards the end of August. I live in Southern California but

will be visiting my father who lives in Boulder from August 18-23. So, I

might be able to attend- I went to the NDSS conference last summer in San

Diego and LOVED it! I'm glad to hear that this one is cheaper because

the NDSS conference was really expensive!!!! $450 for my hubby and I

both to attend. THANK GOODNESS for funding (>:

Thanks in advance for the info.

Kriston, Mom to Hunter, 3 1/2 years old and 4 others

________________________________________________________________

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Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

re: " $450 for my hubby and I both to attend "

That's what we're paying for the one in Nashville. Neither of them are

cheap. I did call the folks from NDSS and inquired about the price. I said

the folks who probably need to workshops the most might not be able to come

at those prices. They said they do offer scholarships, of sorts.

Is anybody using the child care facility at the hotel? We are bringing a

babysitter, whom we will pay, but we wanted to let our kids be at the

hotel's child care place, so they'd be close by. If, we do that, we have to

pay the child center rate of 8/hr, in addition to our sitter.

Unfortunately, we don't have the luxury of not bringing a sitter. Both of

our kids have medical needs, and an unfamiliar person couldn't possibly get

up to speed that quickly, plus I just couldn't leave them with someone I

don't know. Anyone else have thoughts on that?

Re: NDSC Conference

HI Debbie-

Can you tell me when the NDSC Conference is going to be? I'm pretty sure

that it is towards the end of August. I live in Southern California but

will be visiting my father who lives in Boulder from August 18-23. So, I

might be able to attend- I went to the NDSS conference last summer in San

Diego and LOVED it! I'm glad to hear that this one is cheaper because

the NDSS conference was really expensive!!!! $450 for my hubby and I

both to attend. THANK GOODNESS for funding (>:

Thanks in advance for the info.

Kriston, Mom to Hunter, 3 1/2 years old and 4 others

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Hi-

My family will be attending the conference. We are arriving Thursday night,

staying at the hotel (Hyatt).

I received the NDSC newsletter and it said they will be offering specific

opportunities for internet listserves and chat room buddies to meet. Hard

to say what that means, but I think we should have a prior game plan, I like

the smiley face button idea, will have to find one......

I'll make a list of those folks attending.

from Colorado

debbie

who else??

Kelli mom to austin 6 yrs. old

>From: " Deborah Fleischmann " <dfleischmann@...>

> " groups (DOT) com " < >

>Subject: NDSC Conference

>Date: Wed, 10 Jul 2002 21:39:36 -0400

>

>Hi, everybody-

>

>For those of you attending the NDSC conference in August, I'd like to

>figure

>out a way we can meet. I will be staying at the Hyatt where the conference

>is being held, so you can always contact me there. I'm flying in Friday

>late afternoon, so maybe we can meet in the lobby at a specific time, and

>wear a happy face button so we'll know each other. Does anyone have any

>other suggestions?

>

>Debbie

>Mom to Caitlin

>

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[Guest guest]

i would actually like to know about this conference. i cant seem to find any

details.

thanks, kerrie

mom to ben 17ds and alex 14nda

[Guest guest]

Hi Ginny -

I can relate to your feelings about support groups and the major

assoications both the NDSS and NDSC having so much energy and effort

towards " typical " and " success " while those with challenges - whether

they be due to dual diagnosis or individuals that are lower

functioning and not " more like typical children than different " ....it

can be an isolating and frustrating experience. I do know that

because of Joan's hard work and the response of how many families

attend the seminars about DS/ASD that in my opinion, the tip of the

ice berg is just starting to be addressed. In a recent newsletter

for the NDSC, the editor wrote about the issue of all individuals and

families need to be part of the association's community. If not

welcomed, embraced and supported - if ALL accomplishments and hard

work is not recognized and celebrated, along with continued efforts

to help everyone meet their full potential, then how can these

associations expect and fight for our greater society and community

of the " real world " to accept people with DS? I'll try to find the

editorial and post it for the listserv. It gave me hope that all of

us can feel like we belong - I'm thrilled for the individuals and

their families who have great success and become self-advocates and

break down barriers. I understand the need to celebrate and get the

word out - but to make those of us who struggle get to the point we

feel abandoned and not part of the community is signal enough for

change.

That is one of the reasons I want to be in Philadelphia. A friend of

mine with a 14 year old son with DS/PDD and very involved with NDSS

spoke up at their last convention. Sadly, with mixed reviews in her

very diplomatic and mindful effort at this issue. We have to keep

trying while being here for each other.

Sorry I got on my soapbox! In fact, Joan you may have a better sense

of how things are in the bigger conference gatherings and with the

associations. I don't mean to imply I have any recent knowledge -

just so far my own experience and the topic has come up in the

newsletter of the NDSC and my friend at the last NDSS conference.

Ann

> Hi Joan! THANKS for the information. I stopped belonging to the

NDSC,

> because I had felt that I had so little in common with the typical

> families of children with Down Syndrome. I'm printing out the

brochure

> right now. I guess I'll never have the chance to have the NDSC in

my

> own backyard (well, almost, but it is 10 miles or less from my

house to

> the Adam's Mark hotel). I know you are presenting, and I'll throw

this

> out to the group, but have you found that going to this conference

is

> helpful to those families dealing with a dual diagnosis? I stopped

> going to any support groups for families with DS. Personally, I

find

> it difficult sometimes to be around " typical " children with Down

> Syndrome, I think because their don't truly understand me or my

child--

> that 's " poor " skills reflect on us dealing badly with

him,

> rather than the skills he has being extremely hard fought and how

much

> we have done and continue to do. I'd really like to hear what

people

> think, especially those who have gone to this conference in the

past.

> THANKS so much.

> Best wishes,

> Ginny

> Mom to (DS/PDD/AML in remission/100% boy)

[Guest guest]

At 08:49 PM 7/7/2003 +0000, you wrote:

> I know you are presenting, and I'll throw this

>out to the group, but have you found that going to this conference is

>helpful to those families dealing with a dual diagnosis?

HI all:

Well.......this is a difficult one to answer because I have promised myself

that I will never ever lead you all knowingly astray, nor will I be a part

of a negative campaign. I like to keep my opinions very quiet on these topics.

AT NDSS I am presenting on nutrition as well as ds-asd as the parent

component. Not sure what I will say.

AT NDSC I am presenting on nutrition: early years and teens/adults.

I must tell you that I have input to the content of NDSS conferences, but I

had to fight a little for this one. The thought was to put ds/asd in a

group with all dual diagnoses. Drs and Capone will be presenting

as well: they are the two who devote the most time to this in the DSMIG.

To be frank, I don't think either conference will have a lot of information

that is immediately helpful to families who already have a diagnosis beyond

perhaps finding other families in the same situation to talk with. I am

disappointed that both national organizations have completely overlooked

the power and best practice of using assistive technology for anyone wiht

DS or a developmental disability to bridge the gaps between ability and

inability. I am disappointed neither group has any sort of credible

augmentative communicatin expert or assistive technology expert or

curricular adaptation expert who is actively involved in crafting helpful

information for those who have to work harder to be " included. "

And, both conferences play to the crowd. The crowd wants inspiration;

dreams; things to cling to. They want to see ultimate possibilities. And I

dont' blame them. So the inspirational stories and what not are essential

for hte mainstream to remain buoyed about what they are doing. And that's

great. I have to say that I was really disturbed one year when after a

talent show more than one professional came up to me and commented on the

disaster the people's weights were. Their accomplishments were completely

lost to these folks because tey were so focused on the kids' weights! I

found that very sad. WE can't have *everything* in most cases.

I have enjoyed some of the programs NDSS has developed. My friend,

Lack, pulled together a " changing lives " program that is great for helping

residents, physicians, and health care providers get up to speed with

proper care and best practices for infants to adults wiht DS. It's a great

program.

And while both struggle to carve their paths, the path being created is

increasingly less likely to meet the growing needs of my family. I need

info on Positive Behavior Supports and how to bring them effectively into

my home; how to fund the full-time support and skills trianing my son needs

to continue to learn; how to create new programming at the schools to

support Andy in a way that is meaningful and not babysitting; ways to adapt

curriculum and communicatin systems to meet his needs and int4erests--he is

indeed interested; how to build a life for a person who will always always

need others to survive. I don't see that as part of the equation at this

time for either group.

So....I go and share and give to those who are seeking answers. Not all

have a dual diagnosis, but desperately need to hear about AAC/AT and visual

systems. Checklists and methods of creating support that isn't tied to

bodies. All things I am learning while I am learning to support my son. If

the topics in D/S and the response to them is any indication, I know I'm on

the right track.

If you go, go with the idea that you are seeking the few others who attend

and have time to spend some time. I dont' alway shave time to share

anymore, which is a problem. By the end of the weekend I am spent and feel

pretty useless. But in my heart, I hope that I am at least compassionate

adn welcoming to those who are having a harder time. Just don't look to me

for the answers. I ain't got none. We're all walking this path together and

learnign from each other. There's no way we can do it alone.

Take care,

joan

[Guest guest]

Joan,

thank you for your honesty and forthcoming thoughts on these two conferences.

At 08:06 PM 7/7/03 -0700, you wrote:

>At 08:49 PM 7/7/2003 +0000, you wrote:

> > I know you are presenting, and I'll throw this

> >out to the group, but have you found that going to this conference is

> >helpful to those families dealing with a dual diagnosis?

>

>HI all:

>

>Well.......this is a difficult one to answer because I have promised myself

>that I will never ever lead you all knowingly astray, nor will I be a part

>of a negative campaign. I like to keep my opinions very quiet on these topics.

>

>AT NDSS I am presenting on nutrition as well as ds-asd as the parent

>component. Not sure what I will say.

>

>AT NDSC I am presenting on nutrition: early years and teens/adults.

>

>I must tell you that I have input to the content of NDSS conferences, but I

>had to fight a little for this one. The thought was to put ds/asd in a

>group with all dual diagnoses. Drs and Capone will be presenting

>as well: they are the two who devote the most time to this in the DSMIG.

>

>To be frank, I don't think either conference will have a lot of information

>that is immediately helpful to families who already have a diagnosis beyond

>perhaps finding other families in the same situation to talk with. I am

>disappointed that both national organizations have completely overlooked

>the power and best practice of using assistive technology for anyone wiht

>DS or a developmental disability to bridge the gaps between ability and

>inability. I am disappointed neither group has any sort of credible

>augmentative communicatin expert or assistive technology expert or

>curricular adaptation expert who is actively involved in crafting helpful

>information for those who have to work harder to be " included. "

>

>And, both conferences play to the crowd. The crowd wants inspiration;

>dreams; things to cling to. They want to see ultimate possibilities. And I

>dont' blame them. So the inspirational stories and what not are essential

>for hte mainstream to remain buoyed about what they are doing. And that's

>great. I have to say that I was really disturbed one year when after a

>talent show more than one professional came up to me and commented on the

>disaster the people's weights were. Their accomplishments were completely

>lost to these folks because tey were so focused on the kids' weights! I

>found that very sad. WE can't have *everything* in most cases.

>

>I have enjoyed some of the programs NDSS has developed. My friend,

>Lack, pulled together a " changing lives " program that is great for helping

>residents, physicians, and health care providers get up to speed with

>proper care and best practices for infants to adults wiht DS. It's a great

>program.

>

>And while both struggle to carve their paths, the path being created is

>increasingly less likely to meet the growing needs of my family. I need

>info on Positive Behavior Supports and how to bring them effectively into

>my home; how to fund the full-time support and skills trianing my son needs

>to continue to learn; how to create new programming at the schools to

>support Andy in a way that is meaningful and not babysitting; ways to adapt

>curriculum and communicatin systems to meet his needs and int4erests--he is

>indeed interested; how to build a life for a person who will always always

>need others to survive. I don't see that as part of the equation at this

>time for either group.

>

>So....I go and share and give to those who are seeking answers. Not all

>have a dual diagnosis, but desperately need to hear about AAC/AT and visual

>systems. Checklists and methods of creating support that isn't tied to

>bodies. All things I am learning while I am learning to support my son. If

>the topics in D/S and the response to them is any indication, I know I'm on

>the right track.

>

>If you go, go with the idea that you are seeking the few others who attend

>and have time to spend some time. I dont' alway shave time to share

>anymore, which is a problem. By the end of the weekend I am spent and feel

>pretty useless. But in my heart, I hope that I am at least compassionate

>adn welcoming to those who are having a harder time. Just don't look to me

>for the answers. I ain't got none. We're all walking this path together and

>learnign from each other. There's no way we can do it alone.

>

>Take care,

>joan

>

>

>

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[Guest guest]

The dates are July 21-23. I am very excited about being there! I will be

exhibiting for International Mosaic Down Syndrome Association and I will be

giving a workshop on the Myths and Facts of MDS.

I hope to see you all there!

Kristy

[Guest guest]

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National Down Syndrome Congress

Golden Dreams, Sacramento, CA

Sacramento - California at its very finest!

NDSC Convention

Online Registration and Information

Find Everything You Need at the NDSC Website

Online Registration Online Hotel Reservations 2009 Convention Brochure Y & A Forms Updated Speaker List Volunteer Information

Dear NDSC Members and Friends,

The NDSC Convention--for some, it's become an annual tradition. For others, our 37th in Sacramento will be your first. Either way, we can't wait to see you there!

Some important deadlines are quickly approaching. Don't miss out on the Early Bird Registration savings: Register by June 22nd and save money! The registration deadline for all pre-conference sessions is also June 22nd.

As expected, the Youth and Adults Conference is filling up. Don't forget, the deadline for registration for all Youth and Adult attendees is June 22nd! We will not be able to accept any Y & A registrations after this date.

Third Hotel Added to Convention Block

Just two blocks from the Convention Center!

Residence Inn Sacramento at Capitol Park

1501 L Street

Sacramento, CA 95814

Convention Rate is $119, includes breakfast and ALL rooms sleep 4!

Just call the SCVB Housing Hotline: (866) 870-3303.

IMAX Theater Reception and Screening of California Adventures

Thursday, July 30 from 7 to 10pm

The NDSC is hosting an open house at the IMAX Theater for families arriving early, with two screenings of the movie California Adventures. More information about this fun, family night at the IMAX will be available on the NDSC website in the coming weeks. (Space will be limited, so watch the website and emails for details about show times and tickets.)

Sunday, August 2 - 12:00 to 2:00pm

New Technology for Detecting Down Syndrome: "What does the new test really mean?"

Down syndrome advocates have greeted the news of an early maternal blood draw screening test with both interest and apprehension. What is this test? What will it mean to the future of the Down syndrome community? In addition to learning the facts about the screening test, participants will also have a chance to pose questions to Sequenom representatives and to participate in discussion about their hopes and concerns regarding this new technology.

For the most updated information about workshop presenters and topics, visit our website: https://www.ndsccenter.org/convention09/docs/2009_Convention_Speaker_List.pdf

Youth and Adults

Have you registered for the Youth and Adults conference, but still have some paperwork to turn in? Make sure you've sent us your Pass Release and Release Indemnification Forms:

https://www.ndsccenter.org/convention09/docs/PassReleaseForm.pdf https://www.ndsccenter.org/convention09/docs/IndemnificationForm.pdf

And what about the Memory Book? We know you want to be included in this "convention yearbook" for our Y & A attendees. All Memory Book forms must be returned by June 22. Can't find your form?

https://www.ndsccenter.org/convention09/docs/MemoryBookForm.pdf

Don't forget the Talent Show on Sunday! Those forms need to be turned in, too!

https://www.ndsccenter.org/convention09/docs/TalentShowForm.pdf

Questions? Contact us at info@... and we can help!