Special Teams Chat Transcript – February 25

#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
         
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