Raising awareness for 22q differences 💙 Supporting individuals and families from diagnosis through adulthood 🤝
Colorado, USA
Joined November 2015
- Tweets388
- Following1.4K
- Followers1.1K
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22q Family retweeted
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
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-10900612…
Apple: podcasts.apple.com/gb/podcas…
Spotify: open.spotify.com/episode/6Wk…
22q Family retweeted
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
Thank you @AdamHoge and thank you @JaredLAndersen. The @CHGO_Bears tailgate looks like a blast, now let’s hope the @ChicagoBears get the win!!
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…
22q Family retweeted
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…
22q Family retweeted
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!
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…
22q Family retweeted
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…
22q Family retweeted
🧵 Arnold @Schwarzenegger is the greatest orator of our time.
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 retweeted
@PFTCommenter @BarstoolBigCat @hen_ease @PardonMyTake after that beautiful fake punt, could you all make DANalytics shirts and use the proceeds to donate to @22qFamily?
22q Family retweeted
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
22q Family retweeted
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/5RA…
22q Family retweeted
Hey @whitesox we are finally coming to @GuaranteedRate Field as part of the #22qMLBTour!! See you on July 8th! #22q #22qawareness @22qFamily
22q Family retweeted
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
22q Family retweeted
.@mcuban Do you foresee @costplusdrugs ever carrying medically necessary formula? We’ve had some families in our community (@22qFamily) where insurance will not cover very expensive formulas their children require to survive. It’s been extremely frustrating.
22q Family retweeted
22q11.2 Deletion Syndrome is the 2nd most common genetic disorder but due to the wide range of 190 potential mild to life threatening symptoms, it often goes undiagnosed. To learn more, check out 22qfamilyfoundation.org. Also, please donate $1 at bit.ly/22qaware22 and RT!
