22q Family
388 posts
22q Family
@22qFamily
Raising awareness for 22q differences 💙 Supporting individuals and families from diagnosis through adulthood 🤝
Colorado, USA Katılım Kasım 2015
1.4K Takip Edilen1.1K Takipçiler
22q Family retweetledi
Caring for a child with a 22q11 deletion? Did you know 1 in 100 could have TANGO2 deficiency disorder. An inborn error of metabolism associated with arrhythmia and rhabdomyolysis but curiously responsive to B5. #thinkrare @22qFamily @vcfs22q11 #22q11 @M4RareDiseases
The Journal of Inherited Metabolic Disease@JIMD_Editors
In a year full of gene therapy stories, this podcast brought news about a simple, cheap and life changing intervention for families and children with TANGO2 deficiency. Soundcloud: soundcloud.com/user-109006120… Apple: podcasts.apple.com/gb/podcast/b-v… Spotify: open.spotify.com/episode/6WkgNe…
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22q Family retweetledi
This year the 22q Family Foundation is taking you on tour. As we discover different ERAS of 22q11.2 Deletion Syndrome. To find out more and see everyone else EARS go to the22qfamilyfoundation.com and please donate. #22qawareness #22qfamilyfoundation #TaylorSwift
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22q Family retweetledi
Thank you @AdamHoge and thank you @JaredLAndersen. The @CHGO_Bears tailgate looks like a blast, now let’s hope the @ChicagoBears get the win!!
Adam Hoge@AdamHoge
Congrats to @JaredLAndersen for the high bid on the Bears tix for Thursday night! And thanks to @Leftano3, who donated the great seats. We were able to raise $600 for @22qFamily! Please take a moment to learn more about 22q during 22q Awareness Month: 22qfamilyfoundation.org/what-is-22q/22…
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22q Family retweetledi
Congrats to @JaredLAndersen for the high bid on the Bears tix for Thursday night!
And thanks to @Leftano3, who donated the great seats. We were able to raise $600 for @22qFamily!
Please take a moment to learn more about 22q during 22q Awareness Month:
22qfamilyfoundation.org/what-is-22q/22…
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22q Family retweetledi
Right now the high bid for the pair is $350. We’ll keep this open until this evening. Hit me up in my DMs to bid.
Again, pair of tix in Section 103 for Thursday’s Bears-Panthers game + access to the @CHGO_Sports tailgate!
All proceeds benefit @22qFamily!
Adam Hoge@AdamHoge
November is 22q Awareness Month and once again, a generous listener has donated #Bears tickets, with all proceeds going to @22qFamily! These are good seats (Section 103) for Bears-Panthers next Thursday night (Nov. 9)! I will also throw in access to our CHGO tailgate. How to bid: Just shoot me a DM with what you are willing to bid for the tickets. I’ll leave this open until Monday evening and we’ll select a winner! Learn more about 22q here: 22qfamilyfoundation.org/what-is-22q/22…
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22q Family retweetledi
November is 22q Awareness Month and once again, a generous listener has donated #Bears tickets, with all proceeds going to @22qFamily!
These are good seats (Section 103) for Bears-Panthers next Thursday night (Nov. 9)! I will also throw in access to our CHGO tailgate.
How to bid: Just shoot me a DM with what you are willing to bid for the tickets. I’ll leave this open until Monday evening and we’ll select a winner!
Learn more about 22q here: 22qfamilyfoundation.org/what-is-22q/22…
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@Trinidadflagguy Hi there @Trinidadflagguy! Would you have any interest in helping to raise awareness for 22q11.2 deletion syndrome this November?
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22q Family retweetledi
Join us on our Worldwide 22q AwERAness Tour starting Nov 1. I don’t know about you, but I think it’s time everyone knew about #22q! #TSTheErasTour #TaylorSwift #taylornation
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22q Family retweetledi
@PFTCommenter @BarstoolBigCat @hen_ease @PardonMyTake after that beautiful fake punt, could you all make DANalytics shirts and use the proceeds to donate to @22qFamily?
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22q Family retweetledi
GIF
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22q Family retweetledi
After 6.5 years of the #22qmlbtour, we are finally headed home to see Cohen’s favorite team at their home stadium. @whitesox we will see you on Saturday!! #22qaware #22qfamily @22qfamily #baseball #chicago #whitesox #cardinals #southpaw #sweethomechicago
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22q Family retweetledi
I recently had a chance to go on the @22qFamily Podcast to discuss our son’s journey with 22q. Would love it if you’d take some time to listen and learn about it!
open.spotify.com/episode/5RAP5R…
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22q Family retweetledi
Hey @whitesox we are finally coming to @GuaranteedRate Field as part of the #22qMLBTour!! See you on July 8th! #22q #22qawareness @22qFamily
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22q Family retweetledi
It’s Rare Disease Day. Top 5 blessings
5. You learn some things are beyond our understanding
4. You learn new ways to love
3. Differences bring out the best in us
2. Humility to accept the kindness of others
1. You see the world in a different, previously unimaginable light
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@syndrome22q1 @MattxRed @elonmusk If you all ever need any info, support services, or someone to chat with about the journey with 22q, we are here!!
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My name is Justin I live with a disability called 22q syndrome I would be so happy to get millions of hellos from everyone using the hashtag #GreetingsJustin just a hello would make my day nothing else retweet
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