#Specialteams transcript with guest @sneakpeekatme talking about Rare Disease Day campaign
All times are Pacific Time
| February 25, 2010 | ||||
| 1:52 am | AliNichole0619: | RT @sneakpeekatme: in 15 min. I’ll be @ the #specialteams chat discussing Rare Disease Day & how you can help over here: http://tweetchat.com/room/specialteams | ||
| 1:56 am | supercatcalhoun: | #specialteams Hello! | ||
| 1:57 am | AliNichole0619: | I’m here…figured it out 🙂 *fortunately it was very easy! Thanks @sneakpeekatme #specialteams | ||
| 1:57 am | sneakpeekatme: | @supercatcalhoun Hi Cat! Just waiting for @ SpecTeams to show up and get us rolling tonight. Kids in bed already? #specialteams | ||
| 1:58 am | sneakpeekatme: | @AliNichole0619 I love TweetChat…so easy to use. #specialteams | ||
| 1:58 am | msbulldogmom: | hello everyone #specialteams | ||
| 1:59 am | sneakpeekatme: | Join me for a #specialteams TweetChat at: http://tweetchat.com/room/specialteams #specialteams | ||
| 1:59 am | sneakpeekatme: | @msbulldogmom Hey Kristi, glad you could make it…just waiting for our host @SpecTeams #specialteams | ||
| 2:00 am | kadiera: | hi everyone #specialteams | ||
| 2:00 am | supercatcalhoun: | @sneakpeekatme // I wish – taking vitamins right now. #specialteams | ||
| 2:00 am | msbulldogmom: | glad to make it!!! thought I missed you I was on a long phone convo with the Barth syndrome foundation founder #specialteams | ||
| 2:00 am | AliNichole0619: | well, hellooo! #specialteams | ||
| 2:01 am | msbulldogmom: | she is going to help me find a way to make the conference this summer #specialteams | ||
| 2:01 am | sneakpeekatme: | Nurse is now leaving wish me luck…hopefully Austin won’t climb all over me in the next 30 minutes #specialteams | ||
| 2:01 am | BarbDittrich: | Hi there, tweeps! #specialteams | ||
| 2:02 am | msbulldogmom: | lol mine is still up gonna have to brb a few times i am sure lol #specialteams | ||
| 2:02 am | sneakpeekatme: | @msbulldogmom Where is the conference? We have one in Boston, but i doubt we can make it’s with @CCAKids #specialteams | ||
| 2:02 am | sneakpeekatme: | @BarbDittrich Hi Barb – glad you could make it. #specialteams | ||
| 2:03 am | kadiera: | Alex is asleep, on time for once! looks like hubby is napping too #specialteams | ||
| 2:03 am | msbulldogmom: | it is at sea world #specialteams | ||
| 2:03 am | msbulldogmom: | this is our chance to connect with other Barth syndrome families and to have CJ seen by BTHS specialists free of charge #specialteams | ||
| 2:04 am | sneakpeekatme: | @msbulldogmom Which one? #specialteams | ||
| 2:04 am | msbulldogmom: | I don’t know how yet but we are gonna go!! It’s the one in FL, sorry 🙂 #specialteams | ||
| 2:05 am | msbulldogmom: | brb 🙂 #specialteams | ||
| 2:06 am | msbulldogmom: | brb #specialteams | ||
| 2:09 am | sneakpeekatme: | Well i am not sure where @SpecTeams is hopefully not locked out of Twitter #specialteams | ||
| 2:10 am | BarbDittrich: | @sneakpeekatme Are we just waiting for her to get started? #specialteams | ||
| 2:10 am | SpecTeams: | Hello folks! sorry for the late arrival! #specialteams | ||
| 2:10 am | SpecTeams: | Developed connection problems at hotel, had to move to another location! #specialteams | ||
| 2:11 am | SpecTeams: | @sneakpeekatme are you still here? #specialteams | ||
| 2:11 am | sneakpeekatme: | @SpecTeams You had us worried! #specialteams | ||
| 2:11 am | AliNichole0619: | @SpecTeams Glad you made it, despite the problems! #specialteams | ||
| 2:12 am | sneakpeekatme: | @SpecTeams I am. I live on Twitter! #specialteams | ||
| 2:12 am | SpecTeams: | Our topic tonight is Rare Disease Day and we’ll jump right in with some moderated questions for @sneakpeekatme #specialteams | ||
| 2:12 am | jterzieff: | #specialteams chat RIGHT NOW at http://bit.ly/9Wc3yl come join us!! topic: Rare Disease Day | ||
| 2:13 am | sneakpeekatme: | Thanks to @SpecTeams for the invite tonight to discuss #blog4rare & Rare Disease Day on Feb 28th #raredisease #specialteams | ||
| 2:13 am | supercatcalhoun: | RT @jterzieff: #specialteams chat RIGHT NOW at http://bit.ly/9Wc3yl come join us!! topic: Rare Disease Day #raredisease #specialteams | ||
| 2:13 am | SpecTeams: | yes, mortified! never been to Atlanta b4 so picture me running the streets with open computer lookin for a connection! LOL #specialteams | ||
| 2:14 am | SpecTeams: | Thanks to @sneakpeekatme for joining us to talk about the Rare Disease Day campaign – a wonderful effort!! #specialteams | ||
| 2:14 am | friedah03: | RT @SpecTeams: Our topic tonight is #RareDisease Day and we’ll jump right in with some moderated questions for @sneakpeekatme #specialteams | ||
| 2:14 am | SpecTeams: | Q1 > Can you tell us what the Rare Disease Day campaign is? #specialteams | ||
| 2:15 am | sneakpeekatme: | @SpecTeams also @supercatcalhoun is with us too #specialteams | ||
| 2:15 am | Sparrowbug: | Here and reading. #specialteams | ||
| 2:15 am | jterzieff: | @sparrowbug @mercedesmy @nuckingfutsmama @jeannevb @aspiringmamam come join the #specialteams chat if you’re around! | ||
| 2:16 am | sneakpeekatme: | You can spread awareness for nearly 30M in US who suffer from #raredisease diagnosis by wearing jeans {or denim} on Feb 28th #specialteams | ||
| 2:16 am | supercatcalhoun: | @sneakpeekatme And Ella too (my daughter, age 9), twitter instead of stories for bed #badmom #specialteams | ||
| 2:17 am | sneakpeekatme: | International, National, Parent Organizations from around the world are joining together to help familes with #raredisease #specialteams | ||
| 2:17 am | AliNichole0619: | RT @sneakpeekatme: spread awareness for nearly 30M in US who suffer from #raredisease diagnosis by wearing jeans on Feb 28th #specialteams | ||
| 2:17 am | SpecTeams: | @supercatcalhoun feel free to jump in on explaining what the campaign is – I’ll ask both of u to introduce yourselves in a mom #specialteams | ||
| 2:17 am | friedah03: | RT @globalgenes: RT 4 #raredisease at the top of every hour!!! ths hour, meet sum vry special children. http://ow.ly/1aW8w #specialteams | ||
| 2:17 am | sneakpeekatme: | It has been difficult to raise awareness for #raredisease as people are more familiar with #health issues like #cancer #specialteams | ||
| 2:18 am | AliNichole0619: | Are there specific #raredisease being noted, or just in general? #specialteams | ||
| 2:18 am | sneakpeekatme: | You can follow @GlobalGenes @RareDiseases @RareDiseaseDay for more info on Rare Disease Day. There are also Facebook groups. #specialteams | ||
| 2:19 am | supercatcalhoun: | grassroots movement to create a “pink ribbon” campaign for kids w/ rare disease to save/improve millions of lives #raredisease #specialteams | ||
| 2:19 am | BarbDittrich: | @sneakpeekatme I think ppl also don’t realize the add’l expense of treating a rare disease. #specialteams | ||
| 2:19 am | SpecTeams: | Q 2 > are there specific #raredisease being noted, or just in general? from @AliNichole0619 #specialteams | ||
| 2:20 am | jterzieff: | @EisleyJacobs @ReganWrites come read/join the #specialteams chat we’re talking Rare Disease Day effort! | ||
| 2:21 am | sneakpeekatme: | @SpecTeams I don’t think there is a specific all inclusive list, but it includes #mito #battendisease #branchiootorenal… #specialteams | ||
| 2:21 am | SpecTeams: | Q3 > @sneakpeekatme @supercatcalhoun can u tell us how/why you got involved in the #raredisease effort? #specialteams | ||
| 2:22 am | AliNichole0619: | so, my little man’s condition #hydranencephaly too 🙂 #specialteams | ||
| 2:22 am | supercatcalhoun: | @SpecTeams campaign’s wide open, we do have Elizabeth J. doing lots with Joubert in Indiana testing out the campaign materials #specialteams | ||
| 2:22 am | sneakpeekatme: | If you need to see a Genetics dr you can be pretty sure you are included on the “list” #specialteams | ||
| 2:22 am | sneakpeekatme: | My 2yo son has a rare genetic condition called branchiootorenal syndrome aka #BOR that’s how we are affected by #raredisease #specialteams | ||
| 2:23 am | BarbDittrich: | @sneakpeekatme I understand NORD’s desciption of rare disease to be 1 in 2,000 births or less. Is that correct? #specialteams | ||
| 2:23 am | sneakpeekatme: | Q3 I became involved in the #raredisease cause when I ran across a post about #blog4rare, so I did here: http://bit.ly/9S0Rdy #specialteams | ||
| 2:23 am | SpecTeams: | q4 > @supercatcalhoun Elizabeth J.? #specialteams | ||
| 2:23 am | supercatcalhoun: | @SpecTeams i found the campaign and just loved it, the group is really open for whatever ideas, i love collaboration #specialteams | ||
| 2:24 am | friedah03: | Q2 I work w/ NORD on #rarediseaseday. Goal 2 raise awareness of all #rarediseases. Many ppl unaware they exist #specialteams | ||
| 2:24 am | SpecTeams: | Q5 > I understand NORD’s desciption of rare disease to be 1 in 2,000 births or less. Is that correct? from @BarbDittrich #specialteams | ||
| 2:24 am | sneakpeekatme: | @BarbDittrich The number would vary. For instance my son’s syndrome is 1 in 40,000 #specialteams | ||
| 2:24 am | supercatcalhoun: | @SpecTeams Elizabeth Joshi, on Facebook, amazing volunteer, at a Jeans Party right now for RDD! #specialteams | ||
| 2:25 am | sneakpeekatme: | I also found @GlobalGenes had a #raredisease campaign that involved wearing jeans on Feb 28th How much simpler can it get? #specialteams | ||
| 2:25 am | jterzieff: | Writer friends and parents, come check out #specialteams chat and learn about the #raredisease campaign http://bit.ly/9Wc3yl going now! | ||
| 2:25 am | AliNichole0619: | @SpecTeams My son’s condition is 1 in 100,000 #hydranencephaly #specialteams | ||
| 2:25 am | Jinxie_G: | RT @jterzieff: Writer friends and parents, come check out #specialteams chat and learn about the #raredisease campaign http://bit.ly/9Wc3yl going now! | ||
| 2:26 am | SpecTeams: | @supercatcalhoun do you have the link handy for her Facebook page? #specialteams | ||
| 2:26 am | friedah03: | @BarbDittrich #raredisease usually defined as less than affecting 200,000 people in US #specialteams | ||
| 2:26 am | supercatcalhoun: | @SpecTeams officially rare if less than 200,000 with the disease, my son is in 1 in 100,000 to 1 in a million #specialteams | ||
| 2:26 am | EisleyJacobs: | RT @jterzieff: Writer friends and parents, come check out #specialteams chat and learn about the #raredisease campaign http://bit.ly/9Wc3yl | ||
| 2:27 am | SpecTeams: | Not a question – but just want to say what you ladies are doing is wonderful! I hope everyone herre will get involved! #specialteams | ||
| 2:27 am | sneakpeekatme: | If you want to be truly inspired just check out the stories of people living with #raredisease here: http://bit.ly/bH01Rq #specialteams | ||
| 2:27 am | supercatcalhoun: | @SpecTeams Global Genes Project, http://www.facebook.com/group.php?v=wall&gid=214263320931 #specialteams | ||
| 2:27 am | SpecTeams: | Q6 > the official #raredisease day is Feb. 28 – beside wearing jeans, what else can people do? especially writers? #specialteams | ||
| 2:27 am | Sparrowbug: | RT @SpecTeams: Not a question – but just want to say what you ladies are doing is wonderful! I hope everyone herre will get involved! #specialteams | ||
| 2:28 am | jterzieff: | RT @sneakpeekatme: I also found @GlobalGenes had a #raredisease campaign that involved wearing jeans on Feb 28th How much simpler can it get? #specialteams | ||
| 2:28 am | BarbDittrich: | @friedah03 OK, that makes more sense. My son has hemophilia which affects about 17,000 in US. I know hemo fdn support RDD. #specialteams | ||
| 2:28 am | sneakpeekatme: | Yes, anyone can #blog4rare you don?t have to be directly affected. Just someone concerned and willing to help spread the word #specialteams | ||
| 2:29 am | SpecTeams: | @BarbDittrich that’s a nice point! rare is rare, but EVERYONE should get involved. this affects us all #specialteams | ||
| 2:29 am | supercatcalhoun: | @sneakpeekatme just got a new badge for #blog4rare, will post this week! #specialteams | ||
| 2:29 am | sneakpeekatme: | @supercatcalhoun is collecting the links and posting them to @CRDNetwork blog… but ANY writing for awareness helps! #specialteams | ||
| 2:29 am | jterzieff: | RT @sneakpeekatme: Yes, anyone can #blog4rare you don?t have to be directly affected. Just someone concerned and willing to help spread the word #specialteams | ||
| 2:30 am | sneakpeekatme: | @supercatcalhoun oh great a button!! #specialteams | ||
| 2:30 am | BarbDittrich: | While jeans are easy way to observe te day, do you think they’re such common attire that it won’t promote conversation? #specialteams | ||
| 2:30 am | SpecTeams: | So writers, parents, supporters can post a blog on their own “space” and message @supercatcalhoun to be included on the list? #specialteams | ||
| 2:31 am | sneakpeekatme: | @BarbDittrich You can also wear a denim ribbon since most people associate ribbons with awareness #specialteams | ||
| 2:31 am | sneakpeekatme: | You can add a ?Raise Your Hand? widget to your blog, readers just click to donate for #raredisease http://bit.ly/a6DvRU #specialteams | ||
| 2:32 am | SpecTeams: | Q& > do u know any1 who is making offical #raredisease campaign denim ribbons – or shld people just make their own? #specialteams | ||
| 2:32 am | BarbDittrich: | @sneakpeekatme Ooooo! I like the denim ribbon idea! #specialteams | ||
| 2:33 am | SpecTeams: | Rare Disease Day is Feb. 28 – this coming Sunday! blog, wear ur “genes” to support #raredisease campaign! #specialteams | ||
| 2:33 am | Sparrowbug: | I like the denim ribbon idea too! #specialteams | ||
| 2:33 am | sneakpeekatme: | @BarbDittrich Just so happens that @supercatcalhoun has a how-to post up about how to make them…if you are the crafty type #specialteams | ||
| 2:33 am | supercatcalhoun: | Rare is not so rare – many parents with rare kids are just barely surviving, building the tribe is hard work but so imp. #specialteams | ||
| 2:33 am | AliNichole0619: | RT @SpecTeams: Rare Disease Day is Feb. 28 – this coming Sunday! blog, wear ur “genes” to support #raredisease campaign! #specialteams | ||
| 2:33 am | sneakpeekatme: | Also @Disc_Health is participating in RDD too, you can check your listings here: http://bit.ly/bXesIW #specialteams | ||
| 2:34 am | SpecTeams: | I know a few writers are following this – feel free to jump in and ask any questions! on #raredisease campaign #specialteams | ||
| 2:34 am | jterzieff: | RT @SpecTeams: Rare Disease Day is Feb. 28 – this coming Sunday! blog, wear ur “genes” to support #raredisease campaign! #specialteams | ||
| 2:34 am | sneakpeekatme: | We need more research, more money, more awareness to help families living with #raredisease diagnosis. You can help us! #specialteams | ||
| 2:34 am | friedah03: | @BarbDittrich More info on #rarediseases here http://bit.ly/NiNbC and #RareDiseaseDay here http://bit.ly/beqnT7 #specialteams | ||
| 2:35 am | sneakpeekatme: | You can follow @GlobalGenes @RareDiseases @RareDiseaseDay for more info on Rare Disease Day. #specialteams | ||
| 2:35 am | SpecTeams: | Q8 > if I understood correctly,Discovery is airing some related programming, is that right? #specialteams | ||
| 2:35 am | Sparrowbug: | RT @sneakpeekatme: Also @Disc_Health is participating in RDD too, you can check your listings here: http://bit.ly/bXesIW #specialteams | ||
| 2:35 am | jterzieff: | RT @sneakpeekatme: We need more research, more money, more awareness to help families living with #raredisease diagnosis. You can help us! #specialteams | ||
| 2:35 am | NehiMomma: | @sneakpeekatme Hi i’m here…the party can commence #specialteams | ||
| 2:35 am | jterzieff: | RT @sneakpeekatme: @BarbDittrich Just so happens that @supercatcalhoun has a how-to post up about how to make them…if you are the crafty type #specialteams | ||
| 2:36 am | AliNichole0619: | RT @sneakpeekatme: Also @Disc_Health is participating in RDD too, you can check your listings here: http://bit.ly/bXesIW #specialteams | ||
| 2:36 am | supercatcalhoun: | RT @sneakpeekatme: We need more research, more money, more awareness to help families living with #raredisease diagnosis. You can help us! #specialteams | ||
| 2:36 am | sneakpeekatme: | @NehiMomma Hi Sarah, better late than never! #specialteams | ||
| 2:36 am | BarbDittrich: | RT @sneakpeekatme: You can follow @GlobalGenes @RareDiseases @RareDiseaseDay for more info on Rare Disease Day. #specialteams | ||
| 2:36 am | SpecTeams: | Q9 > @supercatcalhoun is there a cut off for the blog post list you’re creating? will you be including links up to Feb 28? #specialteams | ||
| 2:37 am | friedah03: | RT @supercatcalhoun: Rare isnt so rare – many parents w/rare kids R jst barely surviving, bldng tribe is hard work but so imp. #specialteams | ||
| 2:37 am | SpecTeams: | @NehiMomma Welcome! Thanks for joining! #specialteams | ||
| 2:37 am | sneakpeekatme: | There global grassroots campaign, just check for your country & events happening in support #raredisease http://bit.ly/dtSg4C #specialteams | ||
| 2:38 am | SpecTeams: | Rare isnt so rare – many parents w/rare kids R jst barely surviving, bldng tribe is hard work but so imp.<<AMEN! #specialteams | ||
| 2:38 am | NehiMomma: | @sneakpeekatme you’ll have to get on my blog later…and add that widget #specialteams | ||
| 2:39 am | sneakpeekatme: | If you would like to learn more about my son?s “designer genes”, you can follow his story here: http://bit.ly/abouta #specialteams | ||
| 2:40 am | SpecTeams: | these lovely ladies are moms stepping up to do something wonderful for us all and deserve our sppt #raredisease #specialteams | ||
| 2:40 am | Sparrowbug: | RT @sneakpeekatme: If you would like to learn more about my son?s “designer genes”, you can follow his story here: http://bit.ly/abouta #specialteams | ||
| 2:40 am | sneakpeekatme: | I sat one day and watched the videos of families affected…boy was that a tough day. So many lives are affected… #specialteams | ||
| 2:41 am | SpecTeams: | so join the #raredisease campaign Feb. 28 – wear your “genes,” write blog posts n send link to @supercatcalhoun #specialteams | ||
| 2:41 am | AliNichole0619: | Read more about my ‘lil man & his “designer genes” at~ http://www.caringbridge.org/visit/braydenharper #hydranencephaly #specialteams | ||
| 2:41 am | supercatcalhoun: | I am planning a #blog4rare on Sunday – so any links would be welcome! #specialteams | ||
| 2:41 am | jterzieff: | RT @SpecTeams: these lovely ladies are moms stepping up to do something wonderful for us all and deserve our sppt #raredisease #specialteams | ||
| 2:41 am | jterzieff: | RT @SpecTeams: so join the #raredisease campaign Feb. 28 – wear your “genes,” write blog posts n send link to @supercatcalhoun #specialteams | ||
| 2:41 am | BarbDittrich: | I don’t know what other rare disorders are like, but meds 4 hemophilia are so expensive ‘cuz small pool bears costs. #specialteams | ||
| 2:42 am | sneakpeekatme: | @AliNichole0619 Will do!! We love making new friends. #specialteams | ||
| 2:42 am | SpecTeams: | @supercatcalhoun can you put up the link for the blog list one more time for us? #specialteams | ||
| 2:42 am | SpecTeams: | @BarbDittrich another good point! part of raising awareness is the drive to help families cope with #rarediseases #specialteams | ||
| 2:43 am | sneakpeekatme: | @BarbDittrich Oh the costs are staggering! I call Austin my Million Dollar baby…I am afraid to add the costs. #specialteams | ||
| 2:43 am | jterzieff: | RT @SpecTeams: @BarbDittrich another good point! part of raising awareness is the drive to help families cope with #rarediseases #specialteams | ||
| 2:44 am | jterzieff: | RT @sneakpeekatme: @BarbDittrich Oh the costs are staggering! I call Austin my Million Dollar baby…I am afraid to add the costs. #specialteams | ||
| 2:44 am | AliNichole0619: | @BarbDittrich Any associated w/ #raredisease or #specialneeds automatically carries a heftier price tag…eqpmt, meds, etc. #specialteams | ||
| 2:44 am | supercatcalhoun: | @SpecTeams blog links, email hellocatcal@gmail.com #specialteams | ||
| 2:45 am | SpecTeams: | @supercatcalhoun wonderful, thanks!!! #specialteams | ||
| 2:45 am | BarbDittrich: | @SpecTeams Absolutely! Son’s meds alone run about $3,000/wk. Others w/ rare diseases must have same story & should share it! #specialteams | ||
| 2:46 am | sneakpeekatme: | Here is the current list of bloggers & parents who have joined #blog4rare http://bit.ly/a0ELWX #specialteams | ||
| 2:46 am | Sparrowbug: | RT @BarbDittrich: @SpecTeams Absolutely! Son’s meds alone run about $3,000/wk. Others w/ rare diseases must have same story & should share it! #specialteams | ||
| 2:46 am | SpecTeams: | Deep thanks and appreciation 4 @sneakpeekatme and @supercatcalhoun for their efforts n 4 sharing w/us #raredisease campaign #specialteams | ||
| 2:46 am | NehiMomma: | @sneakpeekatme tell me again how to join #specialteams | ||
| 2:47 am | AliNichole0619: | Resources, optimistic & understanding medical “professionals”, hope…#raredisease families need sooo much help all around! #specialteams | ||
| 2:47 am | friedah03: | @BarbDittrich This is very common, high costs of dealing with rare diseases #specialteams | ||
| 2:47 am | SpecTeams: | @BarbDittrich OMG! 3,000 dollars a week!?!?!?1 I had no idea …. #specialteams | ||
| 2:48 am | SpecTeams: | @NehiMomma and others – i am developing #specialteams – just started last week; follow me and @jterzieff >> #specialteams | ||
| 2:48 am | supercatcalhoun: | stay connected with Global Genes beyond RDD, campaign is on-going, will celebrate the bday of blue jeans in May #specialteams | ||
| 2:48 am | kadiera: | @SpecTeams doesn’t take much to add up quickly – my son had a med that was $75/dose, twice a day… #specialteams | ||
| 2:48 am | sneakpeekatme: | @NehiMomma Join me for a #specialteams TweetChat at: http://tweetchat.com/room/specialteams #specialteams | ||
| 2:48 am | SpecTeams: | >> I will post the chat transcript on my web site www.julietterterzieff.com and am in the process of creating a dedicated site #specialteams | ||
| 2:49 am | SpecTeams: | @kadiera my god — our son’s situation was quite different. we didn’t have the expensive daily meds #specialteams | ||
| 2:49 am | sneakpeekatme: | @supercatcalhoun Are (m)any jean makers helping out? #specialteams | ||
| 2:49 am | friedah03: | Raise Yr Hand 2 Fight #RareDiseases. Click 2 trigger a Lundbeck donation to @RareDiseases research fund http://bit.ly/ddRRRa #specialteams | ||
| 2:49 am | BarbDittrich: | @SpecTeams Crazy, isn’t it?! Thx @sneakpeekatme & @supercatcalhoun for your work on this! #specialteams | ||
| 2:50 am | SpecTeams: | #specialteams is intended to be a place for parents, supporters, caregivers to come together and find the support I couldn’t #specialteams | ||
| 2:50 am | NehiMomma: | @sneakpeekatme i’m here in the tweet chat…send me a link for the blog and how to join #specialteams | ||
| 2:50 am | supercatcalhoun: | sounds great #specialteams | ||
| 2:51 am | SpecTeams: | This will tell you about me, our son, and why I’m trying to do this: http://aspiringmama.com/?p=959 or check out my web site #specialteams | ||
| 2:51 am | sneakpeekatme: | @NehiMomma there is no blog to join…this is it baby! You’re here! It’s parents connecting on Twitter (soon to be a website) #specialteams | ||
| 2:52 am | SpecTeams: | @NehiMomma for now, follow me here, join the chat every Wed. night, and I’ll keep you all posted on the #specialteams website #specialteams | ||
| 2:52 am | sneakpeekatme: | @SpecTeams Did we use up all your chat time? #specialteams | ||
| 2:52 am | SpecTeams: | Website will have resources, a team roster, blog posts, etc, etc … just need a few days to get it all up and running>> #specialteams | ||
| 2:53 am | SpecTeams: | @NehiMomma keep checking the #specialteams hashtag, and my website www.julietteterzieff.com for updates! #specialteams | ||
| 2:53 am | sneakpeekatme: | Did we answer all your questions about #raredisease day and how to participate? join us in your Jeans on Sunday Feb 28th #specialteams | ||
| 2:54 am | Sparrowbug: | It must be frustrating to try to find help for a child with a #raredisease #Autism is at 1 in 150 and seriously underfunded. #specialteams | ||
| 2:54 am | SpecTeams: | @sneakpeekatme No problem!!! Thank you and @supercatcalhoun for taking the time! I hope every1 chat/reading will get involved! #specialteams | ||
| 2:55 am | BarbDittrich: | @sneakpeekatme Are there any plans for continued building of awareness besides 2/28? #specialteams | ||
| 2:55 am | SpecTeams: | Any final questions for @sneakpeekatme or @supercatcalhoun ?? follow them, their blog n their efforts for #raredisease #specialteams | ||
| 2:55 am | sneakpeekatme: | Here is the link if you would like to make your own denim ribbons: http://bit.ly/8ZPfKv for #raredisease #specialteams | ||
| 2:56 am | SpecTeams: | From @sparrowbug a child with a #raredisease #Autism is at 1 in 150 and seriously underfunded >. that is TERRIFYING! #specialteams | ||
| 2:56 am | SpecTeams: | Good ? from @BarbDittrich — Are there any plans for continued building of awareness besides 2/28? #specialteams | ||
| 2:56 am | sneakpeekatme: | @BarbDittrich Well I do know it is a Global effort and @supercatcalhoun mentioned that @GlobalGenes is an ongoing effort #specialteams | ||
| 2:57 am | SpecTeams: | Again, 4 those just joining #specialteams – this IS a team effort! I want it 2 b what we all need and want it to be! >> #specialteams | ||
| 2:57 am | SpecTeams: | @ or DM with ideas, suggestions, requests, etc, etc and stay tuned for updates on website for the #specialteams | ||
| 2:57 am | sneakpeekatme: | @BarbDittrich I can tell you this Barb. My effort is ongoing…everyday i work to bring awareness AND understanding for my son #specialteams | ||
| 2:58 am | Sparrowbug: | Are there online support groups for parents with children with #raredisease that you belong to? #specialteams | ||
| 2:59 am | BarbDittrich: | @SpecTeams I will do my part to share continued awareness with my various communities. #specialteams | ||
| 2:59 am | SpecTeams: | If we all come together to share and support each others’ effort, we can make a difference – support #raredisease campaign! #specialteams | ||
| 2:59 am | sneakpeekatme: | @Sparrowbug GREAT question. For me there is only one network of parents for children with BOR, they are in Australia. #specialteams | ||
| 2:59 am | SpecTeams: | Question from @Sparrowbug — Are there online support groups for parents with children with #raredisease that you belong to? #specialteams | ||
| 3:00 am | SpecTeams: | @sneakpeekatme maybe that is something we can build into the #specialteams website and platform moving forward?? #specialteams | ||
| 3:00 am | sneakpeekatme: | @Sparrowbug For that reason I join online parent groups for Tracheostomy & Gtubes…but not for Branchiootorenal syndrome #specialteams | ||
| 3:00 am | BarbDittrich: | @sneakpeekatme I agree… That building of awareness & educating is just naturally part of parenting child w/special needs. #specialteams | ||
| 3:01 am | Sparrowbug: | * @ifollowthenight Latest statistic “officially” recognized to my knowledge is 1 in 144 for #autism but likely under 1 in 100. #specialteams | ||
| 3:01 am | sneakpeekatme: | BUT there are lots of different facebook groups specifically for Rare Disease US and GlobalGenes #specialteams | ||
| 3:02 am | Sparrowbug: | Hey… @jasouders We’re talking about #raredisease at #specialteams hashtag right now. | ||
| 3:02 am | SpecTeams: | This has been wonderful – thank you @sneakpeekatme n @supercatclahoun for joining tonight – Bless you for evereything you do! #specialteams | ||
| 3:03 am | sneakpeekatme: | Thank you to @SpecTeams for inviting us to tweet about this tonight. Helping other parents is my passion. #specialteams | ||
| 3:03 am | SpecTeams: | @aspiringmama it’s still going on over at #specialteams – come join! http://tweetchat.com/room/specialteams | ||
| 3:03 am | Sparrowbug: | RT @SpecTeams: This has been wonderful – thank you @sneakpeekatme n @supercatclahoun for joining tonight – Bless you for evereything you do! #specialteams | ||
| 3:03 am | SpecTeams: | Maybe we could integrate info/support efforts for some of the #rarediseases on the coming web site ?? #specialteams | ||
| 3:03 am | Sparrowbug: | RT @sneakpeekatme: BUT there are lots of different facebook groups specifically for Rare Disease US and GlobalGenes #specialteams | ||
| 3:04 am | sneakpeekatme: | I apologize that I cannot take more time for questions. My son?s nurse has left for the day and mayhem will ensue shortly 😉 #specialteams | ||
| 3:04 am | SpecTeams: | We’re at the hour mark so I guess officially we’re “done” but I’ll still be here for a bit if anyone wants to keep going #specialteams | ||
| 3:04 am | jasouders: | @Sparrowbug Thank you. I’m over there now. #specialteams | ||
| 3:04 am | aspiringmama: | @SpecTeams I can pop in and out. Time to get buttercup ready for bed. #specialteams | ||
| 3:05 am | SpecTeams: | @sneakpeekatme Absolutely understandable!! thank you SO much for this!!! I hope other will get involved! #specialteams | ||
| 3:05 am | sneakpeekatme: | I had a great time tonight!! I am always available if anyone has any questions or comments. #specialteams | ||
| 3:05 am | SpecTeams: | For those just joining or coming in late – we’ve been discussing the #raredisease campaign #specialteams | ||
| 3:06 am | BarbDittrich: | Thanks for the chat & info! Glad to meet some of you for 1st time! #specialteams | ||
| 3:06 am | SpecTeams: | @sneakpeekatme Big hugs! and I hope you’ll come back and join us again in the future!! Thank you! #specialteams | ||
| 3:06 am | Sparrowbug: | Web site: individual events on a calendar with links for this like “walks” (ie I’ve contributed to Tuberous Sclerosis walks.) #specialteams | ||
| 3:06 am | aspiringmama: | @SpecTeams so sorry I missed it. #specialteams. Was thinking 9 pm *my* time. Oops. | ||
| 3:06 am | sneakpeekatme: | @SpecTeams Good night! Thanks for the invite. #specialteams | ||
| 3:06 am | SpecTeams: | Scroll through the http://tweetchat.com/room/specialteams to see the lniks and great ways you can contribute to #raredisease #specialteams | ||
| 3:07 am | aspiringmama: | RT @SpecTeams: For those just joining or coming in late – we’ve been discussing the #raredisease campaign #specialteams | ||
| 3:07 am | SpecTeams: | I will post full transcript on my website www.julietteterzieff.com and blog w/ some of the links as well!!! #blog4rare #specialteams | ||
| 3:07 am | Sparrowbug: | @SpecTeams That was a suggestion, btw. LOL. 140 characters is hard. #specialteams | ||
| 3:08 am | globalgenes: | Social networking at its absolute best: http://tweetchat.com/room/specialteams #specialteams #raredisease #blog4rare PLEASE RT | ||
| 3:08 am | SpecTeams: | Again, thank you all for joining and hope everyone will come back every Wed, night for more from #specialteams | ||
| 3:08 am | SpecTeams: | @Sparrowbug LOL – 140 characters is VERY hard!!! #specialteams | ||
| 3:08 am | sneakpeekatme: | RT @globalgenes: Social networking at its absolute best: http://tweetchat.com/room/specialteams #specialteams #raredisease #blog4rare PLEASE RT | ||
| 3:09 am | aspiringmama: | RT @SpecTeams: Scroll through the http://tweetchat.com/room/specialteams to see ways you can contribute to #raredisease #specialteams | ||
| 3:09 am | aspiringmama: | RT @SpecTeams: I will post full transcript on www.julietteterzieff.com and blog w/ some of the links as well!!! #blog4rare #specialteams | ||
| 3:11 am | jterzieff: | RT @sneakpeekatme: Here is the link if you would like to make your own denim ribbons: http://bit.ly/8ZPfKv for #raredisease #specialteams | ||
| 3:11 am | jterzieff: | RT @friedah03: Raise Yr Hand 2 Fight #RareDiseases. Click 2 trigger a Lundbeck donation to @RareDiseases research fund http://bit.ly/ddRRRa #specialteams | ||
| 3:11 am | sarahemily: | RT @globalgenes: Social networking at its best: http://tweetchat.com/room/specialteams #specialteams #raredisease #blog4rare #specialteams | ||
| 3:11 am | jterzieff: | RT @sneakpeekatme: Here is the current list of bloggers & parents who have joined #blog4rare http://bit.ly/a0ELWX #specialteams | ||
| 3:12 am | sarahemily: | #specialteams Sorry I missed it! | ||
| 3:13 am | SpecTeams: | @sarahemily We’re here every Wed evening at 9E/8C/6PST – hope you’ll come back again!! #specialteams | ||
| 3:13 am | jterzieff: | RT @globalgenes: Social networking at its absolute best: http://tweetchat.com/room/specialteams #specialteams #raredisease #blog4rare PLEASE RT | ||
| 3:14 am | songduck: | RT @sneakpeekatme: There global grassroots campaign, just check for your country & events happening in support #raredisease http://bit.ly/dtSg4C #specialteams | ||
| 3:38 am | AliNichole0619: | RT @globalgenes: Social networking at its absolute best: http://tweetchat.com/room/specialteams #specialteams #raredisease #blog4rare PLEASE RT | ||