Stella Strong

We are on a voyage to find a cure for CDKL5 Deficiency Disorder in time for Stella to benefit from it by creating bridges between existing research groups.

[Sarah Kliff @sarahkliff]

Prenatal tests promise to detect rare genetic diseases in babies by scanning DNA.

Labs market them as "reliable." They tell women to have "total confidence" in results.

It turns out, the grave predictions made by those tests are usually wrong. (1/5)

https://t.co/IsskNpYTWg

[Stella Strong @_StellaStrong_]

@sarahkliff Another F/U I would be curious about: did the false positives actually detect something "wrong" or "off" genetically but the tests didn't know how else to report it & reported it incorrectly. Did the children of false positive end up having any notable health issues? Autism? Etc?

[Stella Strong @_StellaStrong_]

@sarahkliff This was an excellent report & podcast! I can imagine you know you only hit the tip of the iceberg. Would love for you to do F/U reporting on the other side of the equation--doing all genetic tests down to a chromosomal microarray & getting a false negative

[Stella Strong @_StellaStrong_]

Got GIGO? (garbage-in-garbage-out) Not when it comes to #CDKL5 data! Thanks @pulseinfoframe #louloufoundation
https://t.co/DiyX2cdQpL

[Stella Strong @_StellaStrong_]

When a publication titles something "CDKL5-4-3-2-1-gone", @_StellaStrong_ pays attention! Well done @PracticalNeurol for great reporting on #CDKL5!

https://t.co/ecH4qtSBki

[Stella Strong @_StellaStrong_]

"Do not settle...science can do better! ~ @CNSdrughunter, Awardee at the 2021 #CDKL5 Forum (https://t.co/UYPWwlGp1D )

Thank you Ana for ALL that you do!

[Stella Strong @_StellaStrong_]

Excellent talks at this year's #CDKL5 Forum from brilliant minds doing brilliant things! Collaboration at its best to cure this terrible disease & give our kids a real future! Science fiction is becoming Science Non-Fiction! Thank you all! #louloufoundation
@CDKL5Alliance

[Stella Strong @_StellaStrong_]

The 2021 #CDKL5 Forum started out on a phenomenal note with @CDKL5USA's president @cdkl5mom telling the side of the CDKL5 patient & caregivers perfectly. I strongly recommend watching when it becomes available. Thank you Karen & IFCR for all that you do for caregiver support!

[Stella Strong @_StellaStrong_]

Landmark @PennMedicine @UofPenn study gives hope for Stella's, and all living with #CDKL5, future! Thank you Dr. Zhou and team, and all organizations that continue to fund your lifechanging work! We are here to help!

https://t.co/p1wd50JZFx

[Stella Strong @_StellaStrong_]

@_allstripes is one of the leading organizations working for the rare disease community and helping #CDKL5 find a cure! Team Stella Strong are proud AllStripes Ambassadors for CDKL5 and were featured as an "Instagram Takeover" on 10/8/21.
https://t.co/IAmMo4UAp9