MamaBearforRare (@mamabearforrare) 's Twitter Profile
MamaBearforRare

@mamabearforrare

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

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linkhttps://linktr.ee/Mamabearforrare calendar_today17-06-2021 08:57:33

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MontclairPublicSchoolsNJ (@montclairschls) 's Twitter Profile Photo

Glenfield’s Michelle Fruhschien contributed to “Dear Mama, Stories of an Extra Lucky Life,” a collection of letters written by moms representing neurodiverse children. A longtime special education teacher, she is a dedicated advocate of students with special needs. Congrats!

Glenfield’s Michelle Fruhschien contributed to “Dear Mama, Stories of an Extra Lucky Life,” a collection of letters written by moms representing neurodiverse children. A longtime special education teacher, she is a dedicated advocate of students with special needs. Congrats!
Jordan’s Syndrome (@jordansgangels) 's Twitter Profile Photo

Love your family. Eat last. Apologize first. Be kind. Be humble. Share the credit. Do your best. Laugh more. Be respectful. Show gratitude.

Jordan’s Syndrome (@jordansgangels) 's Twitter Profile Photo

8 SELF CARE TIPS FOR PARENTS: 💙 ask friends and family for help 💙 spend time outside everyday 💙 reward yourself 💙 it’s ok to say no 💙 schedule me time 💙 join a supportive community 💙 it’s ok to not be ok 💙 be kind to yourself

Effie Parks (@onceuponagene) 's Twitter Profile Photo

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

Jordan’s Syndrome (@jordansgangels) 's Twitter Profile Photo

Help us grow our social media. Click the links below and "follow" our journey! Facebook: facebook.com/JordansGuardia… Instagram: instagram.com/jordansguardia… Youtube: youtube.com/.../UCaFqEj_N.… Linkedin: linkedin.com/company/jordan… Twitter: x.com/jordansgangels TikTok: tiktok.com/@jordansguardi…

Help us grow our social media. Click the links below and "follow" our journey! 
Facebook: facebook.com/JordansGuardia…
Instagram: instagram.com/jordansguardia…
Youtube: youtube.com/.../UCaFqEj_N.…
Linkedin: linkedin.com/company/jordan…
Twitter: x.com/jordansgangels
TikTok: tiktok.com/@jordansguardi…
Effie Parks (@onceuponagene) 's Twitter Profile Photo

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. curectnnb1.kindful.com/?campaign=1252…

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. 
curectnnb1.kindful.com/?campaign=1252…
Rare Patient Voice (@rarepatientvoic) 's Twitter Profile Photo

MamaBearforRare is our latest Weekly Warrior. Her daughter, Hailey, lives with a rare genetic syndrome. Listen to Michelle tell their story: linkedin.com/feed/update/ur… #RareDisease #advocacy #diagnosis

Effie Parks (@onceuponagene) 's Twitter Profile Photo

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

Jennifer Bain MD/PhD (she/her/ella/Dr.) (@bainbrainlab) 's Twitter Profile Photo

MamaBearforRare is my amazing local mom raising awareness! Rare Disease Month: Montville Mother Spreads Awareness for Daughter's Rare Disease, Jordan's Syndrome tapinto.net/towns/montvill…

Global Genes (@globalgenes) 's Twitter Profile Photo

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: go.globalgenes.org/REG-RDDS-24 #CareAboutRare #RareDiseaseDay

Behind the Mystery (@btmcaresforrare) 's Twitter Profile Photo

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

Effie Parks (@onceuponagene) 's Twitter Profile Photo

Did you know that leftover samples from surgeries on our kids (like Cerebral Spinal Fluid) are most often tossed in the trash? They could hold the key to rare disease breakthroughs. Why aren’t more medical institutions making it a priority to save these valuable resources? What’s