Re: World Down Syndrome Day (cross-post)

[Guest guest]

PLEASE... don't get me started... Seems we r not THAT important afterall the hoopla... I am still waiting in Texas after the letter I received for Mr. Tollsen about 3 commercials. I have yet to see one... Its only been since last yr!!! I could say more but I'd better not... its angers me.vikki668 wrote: HI everyone - haven't posted in a while, but thought I would pass on this little tidbit..... I emailed the NDSS to find out what they

were doing in recognition of World DS Day (3/21)...Here is my email and their response:I was just wondering what NDSS would be doing in conjunction with WorldDown Syndrome Day on 3/21/08? Will there be anyone on news programs,any public service announcements, etc?Thank you.Dear ,In honor of World Down Syndrome Day (3-21) NDSS has secured the ringingof the closing bell at NASDAQ on Monday, 3/17. The closing bell ceremony is aired on MSNBC and Bloomberg. It also getspicked up on Fox News and Fox Business.Regards, QuickAffiliate Coordinator/Information & Referral Specialist My initial response is "whoop-de-doo" Anyone else (think I already know the answer } ) think this is underwhelming?Vikki

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[Guest guest]

Tollsen is with NDSC, right? What commercials?

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of matthewsmom

Sent: Friday, March 14, 2008 2:28 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] World Down Syndrome Day

(cross-post)

PLEASE... don't get me started...

Seems we r not THAT important afterall the hoopla... I am

still waiting in Texas after the letter I received for Mr. Tollsen about 3

commercials. I have yet to see one... Its only been since last yr!!!

I could say more but I'd better not... its angers me.

vikki668 wrote:

HI everyone - haven't posted in

a while, but thought I would pass on

this little tidbit.....

I emailed the NDSS to find out what they were doing in recognition of

World DS Day (3/21)...

Here is my email and their response:

I was just wondering what NDSS would be doing in conjunction with

World

Down Syndrome Day on 3/21/08? Will there be anyone on news programs,

any public service announcements, etc?

Thank you.

Dear ,

In honor of World Down Syndrome Day (3-21) NDSS has secured the

ringing

of the closing bell at NASDAQ on Monday, 3/17.

The closing bell ceremony is aired on MSNBC and Bloomberg. It also

gets

picked up on Fox News and Fox Business.

Regards,

Quick

Affiliate Coordinator/Information & Referral Specialist

My initial response is " whoop-de-doo " Anyone else (think I already

know the answer } ) think this is underwhelming?

Vikki

Never miss a thing. Make Yahoo

your homepage.

[Guest guest]

Tollsen is with NDSC, right? What commercials?

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of matthewsmom

Sent: Friday, March 14, 2008 2:28 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] World Down Syndrome Day

(cross-post)

PLEASE... don't get me started...

Seems we r not THAT important afterall the hoopla... I am

still waiting in Texas after the letter I received for Mr. Tollsen about 3

commercials. I have yet to see one... Its only been since last yr!!!

I could say more but I'd better not... its angers me.

vikki668 wrote:

HI everyone - haven't posted in

a while, but thought I would pass on

this little tidbit.....

I emailed the NDSS to find out what they were doing in recognition of

World DS Day (3/21)...

Here is my email and their response:

I was just wondering what NDSS would be doing in conjunction with

World

Down Syndrome Day on 3/21/08? Will there be anyone on news programs,

any public service announcements, etc?

Thank you.

Dear ,

In honor of World Down Syndrome Day (3-21) NDSS has secured the

ringing

of the closing bell at NASDAQ on Monday, 3/17.

The closing bell ceremony is aired on MSNBC and Bloomberg. It also

gets

picked up on Fox News and Fox Business.

Regards,

Quick

Affiliate Coordinator/Information & Referral Specialist

My initial response is " whoop-de-doo " Anyone else (think I already

know the answer } ) think this is underwhelming?

Vikki

Never miss a thing. Make Yahoo

your homepage.

[Guest guest]

Hi!

The United States to be far behind the band-wagon in regards to World Down Syndrome Day. Here's what I do for my daughter until the U.S. catches up:1.deliver "goody Bags" to my daughter's class-they contain personalized booklets of a photo with her class, a crossword puzzle (about related words),etc.(Gigi's Playhouse makes these booklets FREE OF CHARGE) I also try to read a story in class that day ("We'll Paint the Octopus Red" etc.2.send an email to my entire address book denoting that it is World Down Syndrome Day. This year, I will also attache a link to http://www.youtube.com/watch?v=t_0K-gPlyb0which showcases the new "i have a voice" video featuring amazing pictures of children with DS3. submit articles to both of my kid's school papers (email me for samples)4. write myself a letter about where I am on this journey with DS (incude recent news tidbits to see where the world is as well)5. send press release to local paper to see if they want to feature my daughter in an article (easier than you think)Hope this gives you some ideas!

[Guest guest]

Remember we have a whole month in October, so don't totally discount the efforts here!

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

[DownSyndromeInfoExchange] Re: World Down Syndrome Day (cross-post)

Hi!

The United States to be far behind the band-wagon in regards to World Down Syndrome Day. Here's what I do for my daughter until the U.S. catches up:

1.deliver "goody Bags" to my daughter's class-they contain personalized booklets of a photo with her class, a crossword puzzle (about related words),etc.

(Gigi's Playhouse makes these booklets FREE OF CHARGE) I also try to read a story in class that day ("We'll Paint the Octopus Red" etc.

2.send an email to my entire address book denoting that it is World Down Syndrome Day. This year, I will also attache a link to

which showcases the new "i have a voice" video featuring amazing pictures of children with DS

3. submit articles to both of my kid's school papers (email me for samples)

4. write myself a letter about where I am on this journey with DS (incude recent news tidbits to see where the world is as well)

5. send press release to local paper to see if they want to feature my daughter in an article (easier than you think)

Hope this gives you some ideas!

[Guest guest]

The more occasions to raise awareness, the better. Heres what we are doing over here: Joining efforts, we managed to put together an extensive programme in 18 citiesin Brazil up to now (that we know of) to celabrate 21/3. The programme (a firstversion in English, present one in portuguese and link to download and freelyuse the video in portuguese, spanish or english) is on Down SyndromeInternational web page:http://www.worlddownsyndromeday.org/events.htm On National TV: 13/3 – 8:15 pm TV Globo – Jornal Nacional – News story about World Down Syndrome Day 19/3 – 4ª feira - 14:30 h TV Bandeirantes - Entrevista – Fernanda Honorato, repórter do Programa Especial da TVE e Helena Werneck, Instituto Meta Social

– Ser Diferente Normal On National Radio: 19/3 - 9:14 am Radio Senado – Reporter Nacional – News Story about World Down Syndrome Day 1)Brasília-DF 14/3 – 7 pm Opening DFDOWN – Launch Down21 Brazil Web Site 19/3 - 2:30 pm Talk – Down Syndrome – For teachers, parents and all interested – Education Secretary 21/3 - 9 h Walk It`s Normal to be Different City Park 2)Rio de Janeiro-RJ 16/3 - 10 h Inclusive Walk - RJDOWN Ipanema to Leblon waterfront 3)São o – SP 15 to 20/3 – 1st Down Syndrome Week – Course - Hospital Darcy Vargas – 15/3 - 9 am to 5:15

pm "Knowledge of genetics and Learning in DS", "Cardiologic Aspects in DS", "Audiology in DS", "Complementary or Alternative Communication", "Eye Evaluation in DS", "Neurological Aspects of DS". 16/3 - 8:30 am to 13:30 pm "Early Intervention", "Physiotherapy", "Occupational Therapy", "Speech Therapy", "Hydrotherapy", "Psycho pedagogy". 17/3 – 9 am "Oncology and Down Syndrome" 18/3 - 9 am "Heart Beat – the heart and Down Syndrome" 19/3 - 9 am "The Down Family" 20/03 - 9 am "Urology an Down Syndrome" Invited Teachers: Dr. Andréa Man de Carvalho, Prof. Dr. Camila Dedivitis Tiossi Wild, Prof. Dr. Roizenblatt, Dr. a o, Dr. o Breinis, Prof. Dr. o Franco de Camargo, Profa. Dra. Pessia Grywac Meyerhof, Dra. a Mustacchi, Dra. Cristina Fonseca Pires, Profa. Dra. Gusman, Dra. Valéria Mondin Alabarse dos Santos, Prof. Dr. Zan Mustacchi, Prof. Fábio Adiron, Dr.

Jovelino Quintino Leão, Dra. Lídia Mello de Almeida, Dra. Virgínia L. Machado. Contact: (55 11) 3721-0748 - www.sindromededown.com.br 4)Curitiba-PR 20/3 – 9 am to 5 pm Boca Maldita – Mobilization of people with DS and their families – Information, Painting and Photo Exhibition, T- shirt selling "By each one’s way". 5)Cuiabá - MT 19/3 – Public Audience – International Convention of the Rights of People with Disability 20/03 - 8 h Crafts exhibition - Centro de Reabilitação Dom Aquino Corrêa - ASDMT 6)Fortaleza - CE 17/3 – 3 pm to 5 pm Meeting – Youngsters with Down Syndrome and other intellectual disabilities to discuss themes like their right to leisure, work and education.

Suggestions will be forwarded to the State Meeting of People with Disability and National Forum for Young People. Apae/Fortaleza 17 to 23/3 – Exhibition "Dream High Enough" Benfica Shopping Mall 18/03 - State and Municipal Deputies will make statements refering the date Assembléia Legislativa and Câmara de Vereadores 25/03 – 13 h Meeting on Inclusive Education – Workers on Education Coop - COOEDUCAR - Auditório o Freire 7)João Pessoa – PB 8/03 - 10:30 am Band (local TV Naldo Barbosa program) - Interview Eliane Pacote about 21/3 21/03 – From 6 pm Distribution of folders on DS - Busto de Tamandaré in Tambaú 8)Itabuna-BA 13/3 – 7 pm Presentation – Down Syndrome, New paradigms beyond imaginary... Prof fina Castro. Doctor in education. Universities Santa Cruz and Facsul 14/3 Meeting at Olinto Leone Square –

Distribution of folders, arts show (painting, dance, capoeira). Secretary of Education, Social Wellbeing and Apae 9)São José dos Campos – SP 15/3 -12:00 am Community Barbacue - (Project Light, Building Paths and friends) Salão Vitória - Estrada do Bom Sucesso, 2235 10)Jacareí – SP 21/3 – 2 pm Presentation – Health Eating and Mouth Health – Recreation for children - Project Light - SEST/SENAT Av. Humberto Alencar Castelo Branco, 3.201 - Rio Abaixo 11)Sorocaba – SP 21/3 – 7.30 pm 2nd Meeting – Sorocaba – World Down Syndrome Day Ipanema Clube - Rua Sete de Setembro, 700 – Centro Presentation of people with DS, videos, info, dance and cocktail. Realization: Célia Regina e Tomás André, parents of Bruna

, 25. 12)Juazeiro do Norte/CE 14, 15 and 16/3 – Informative Exhibition Cariri Shopping Mall 14/3 - 6ª - Walk - Leão Sampaio School We also lauched Down21 Brazil, the portuguese version for Canal Down21 ofIberoAmerica.http://www.down21.org/latinoamerica/brasil/marco.htmBoth of them are now included on the links os DSI:http://www.worlddownsyndromeday.org/links.htmBelow, the translation of the news story on the main national news – JornalNacional, Rede Globo, that went on air yesterday, Saturday, regarding World DownSyndrome Day. The show is watched by 60 million people.You can watch the video on the link above and read the translation:http://video.globo.com/Videos/Player/Noticias/0,,GIM803480-7823-CAMPANHA+PELA+IN\CLUSAO+SOCIAL+DE+PORTADORES+DE+DOWN,00.htmlLive presentation - In the next two weeks relatives and friends of people withDown syndrome start a campaign all over Brazil for social inclusion and end ofprejudice.(Video travels through a regular classroom of a public school in Brazil andthe images close on s face) Not long ago, a scene like these would beimpossible: in a regular public school, a student with Down syndrome. Observinglittle eyes, fast fingers when she shows how old she is.“The teacher gives her work and she finishes it up before us”, tells us herfriend Victor Santos.Down syndrome happens on conception. Instead of 46 chromosomes, the new lifestarts with 47. This one

more provokes physical changes and, in many cases,cardiac problems. But modern medicine is attentive of the treatments. What stillremains to evolve is the way we see these differences.“Nothing stops her from doing anything another child can do, respecting hertiming”. She has a different timing, like we all have different timings”,explains geneticist Llerena.´s little friend has an explanation.“Other people, when they speak up, they don´t think. She thinks and, becauseof that, she takes more time to speak”, says her peer.The mother thinks about the future.“That she studies now, that she grows up, that she goes to work and has anautonomous life, that she is a productive person”, hopes the mother.(Live reporter – Beatriz Thiellman) “Aim high enough”, said Dr Down 142 yearsago, when he published his first scientific study on Down syndrome. From thattime to now, the aim to end social exclusion keeps

growing.Today, another knows exactly what not to be necessary to dream anymoremeans. Everything she idealized happened. She has been a receptionist at aclinic for 5 years.“She´s very caring, when she comes to work, she hugs every employee”, tellsher work colleague. says she is very happy and tells us why: “Because I am very important tomyself”.Regards,Pat, mum to , 3.5, Brasilia, Brazil McElwee escreveu: Remember we have a whole month in October, so don't totally discount the efforts here! , Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html [DownSyndromeInfoExchange] Re: World Down Syndrome Day (cross-post) Hi! The United States to be far behind the band-wagon in regards to World Down Syndrome Day. Here's what I do for my daughter until the U.S. catches up: 1.deliver "goody Bags" to my daughter's class-they contain personalized booklets of a photo with her class, a crossword puzzle (about related words),etc. (Gigi's Playhouse makes these booklets FREE OF CHARGE) I also try to read a story in class that day ("We'll Paint the Octopus Red" etc. 2.send an email to my entire address book denoting that it is World Down Syndrome Day. This year, I will also attache a link

to

which showcases the new "i have a voice" video featuring amazing pictures of children with DS 3. submit articles to both of my kid's school papers (email me for samples) 4. write myself a letter about where I am on this journey with DS (incude recent news tidbits to see where the world is as well) 5. send press release to local paper to see if they want to feature my daughter in an article (easier than you think) Hope this gives you some ideas!

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