MamaBearforRare

@Mamabearforrare Just your average Mama making the world more inclusive by sharing stories about my child with Jordan’s Syndrome.

[Behind the Mystery @btmcaresforrare]

Such a special moment from @mamabearforrare and her daughter. A beautiful day for this incredible rare disease warrior and family. ☀️ 🧬 💙

#BehindTheMystery #CareForRare #RareDiseaseCommunity #RareDiseaseAwareness

[MamaBearforRare @MamaBearforRare]

https://t.co/zTFDdI47UL @themontclairgrl @montclairschls @montclairlocal @MontclairNJGov

[MamaBearforRare @MamaBearforRare]

@GlobalGenes Ty for sharing ❤️❤️❤️

[Global Genes @GlobalGenes]

We want to thank @MamaBearforRare for sharing her #ZebraTale in honor of World Rare Disease Day, representing her daughter Haley who has Jordan’s Syndrome. For more on our #ZebraTale initiative and how you can participate:
https://t.co/fCUtVUBM9O

#CareAboutRare #RareDiseaseDay

[Bain Brain Lab @BainBrainLab]

@MamaBearforRare is my amazing local mom raising awareness!
Rare Disease Month: Montville Mother Spreads Awareness for Daughter's Rare Disease, Jordan's Syndrome https://t.co/vM6wh1uMG7

[MamaBearforRare @MamaBearforRare]

@BainBrainLab I love you! Thank you so much for sharing!

[MamaBearforRare @MamaBearforRare]

@BainBrainLab @KidsAtColumbia Amazing 🤩

[MamaBearforRare @MamaBearforRare]

@KaresFoundation @OnceUponAGene @cacna1a @arrefoundation @cureSYNGAP1 @ctnnb1org @PeerMedicalFDN @SaritaEdwards @CureGM1 @CHAMP1Research @CDKL5_IFCR @dup15q @changecadet @RareAdvocates @EveryLifeOrg @ncbrsfoundation @rarepatientvoic ❤️❤️❤️❤️

[Kares Foundation @KaresFoundation]

Please share this 🧵 from our cofounder 🔥

@OnceUponAGene @cacna1a @arrefoundation @cureSYNGAP1 @ctnnb1org @PeerMedicalFDN @SaritaEdwards @CureGM1 @MamaBearforRare @CHAMP1Research @CDKL5_IFCR @dup15q @changecadet @RareAdvocates @EveryLifeOrg @ncbrsfoundation @rarepatientvoic

[Effie Parks @OnceUponAGene]

Hills I'll die on 🗻

1. #GeneticTesting
2. #NBS panel reform to include diseases with 💪PAG's - we don't need available treatments to have an answer that will move us forward in 50 different ways.
3. Juanitas are a terrible tortilla chip
Josephina chips are the 🐐
#RareDisease

[MamaBearforRare @MamaBearforRare]

https://t.co/MHLQpdY9ab https://t.co/MHLQpdY9ab

[MamaBearforRare @MamaBearforRare]

@OnceUponAGene @BainBrainLab Move here. Please and thanks

[MamaBearforRare @MamaBearforRare]

Made my night❤️

[Bain Brain Lab @BainBrainLab]

#suburbanmoms with @MamaBearforRare at summer carnivals! $$$$$$$$

[MamaBearforRare @MamaBearforRare]

Amazing 🥹🥹🥹🥰🥰😍

[Effie Parks @OnceUponAGene]

Visit from my Rare Mama Bear
@JordansGAngels
#CTNNB1Conference

[Effie Parks @OnceUponAGene]

Visit from my Rare Mama Bear
@JordansGAngels
#CTNNB1Conference

[Rare Patient Voice @rarepatientvoic]

@MamaBearforRare is our latest Weekly Warrior. Her daughter, Hailey, lives with a rare genetic syndrome. Listen to Michelle tell their story: https://t.co/WfunbPrb4P
#RareDisease #advocacy #diagnosis

[Effie Parks @OnceUponAGene]

Are you in the Seattle area??
June and July we celebrate Ford's birthday and #CTNNB1 Awareness Day!
Come pick up a sign and put this beautiful face in your yard!
Help us to continue to fund research to help our children have a better life.
https://t.co/rvBviDTKkl

[Jordan’s Syndrome @JordansGAngels]

Help us grow our social media. Click the links below and "follow" our journey!
Facebook: https://t.co/agB28FtE3s
Instagram: https://t.co/baNrAebevc
Youtube: https://t.co/S0Z8i4CGkI
Linkedin: https://t.co/acInnB5lMb
Twitter: https://t.co/X6mr15sG0f
TikTok: https://t.co/O2YymXw3Tj

[Effie Parks @OnceUponAGene]

Say it with me:

"Patient AND Caregiver Voice"

Many of the #RareDisease patients literally have no voice and have intellectual disabilities.

The Caregiver Voice IS their voice.

#CTNNB1

[MamaBearforRare @MamaBearforRare]

@AetnaHelp My daughter was denied a bath shower chair as it was considered medically unnecessary and a convenience item. We are disappointed as she cannot sit independently or keep her head up.

[MamaBearforRare @MamaBearforRare]

@Aetna @AetnaNews @AetnaHelp do better.