Kristen P Davis
@kristenpdavis
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Advocate for PIK3CA Related Conditions. Founder and Executive Director at CLOVES Syndrome Community (views here are my own) #PIK3CA #RareAsOne
Joined July 2017
RT @CLOVESSyndrome: Join us for the 2023 CLOVES Family & Scientific Engagement Conference on June 3, 2023 in Cleveland OH. Together we shar….
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RT @TinyWriterLaura: disabled & chronically ill pals: what’s your favourite book written about chronic illness/disability, and/or your favo….
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This 👇🏼👇🏼👇🏼.
When the clock strikes midnight, it will be Disability Pride Month. There will be no flashy merchandise. Companies won’t be changing their logos. Celebrities won’t be posting on social media about it. And the disabled community still won’t have equity or equality.
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RT @RaqPeck: I heard many powerful quotes during the @cziscience #RareAsOne conference this week, but this particular one keeps replaying i….
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It’s all dog snuggles, rest, deep breaths and love as we wait for the next round of spinal surgeries in two weeks. Ready to have this behind us. #MamaLove #RareAsOne #CLOVESSyndrome #RareDiseaseTruth
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RT @NPR: The U.S. federal government is offering another round of free COVID tests. Households will receive eight tests via the U.S. Postal….
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Help support Riley’s Riders for Research ! . @MDBRide4Rare . #CLOVESSyndrome .
kindful.com
Kindful has partnered with Bloomerang to provide powerful insights, free resources, and helpful information to nonprofits like yours.
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A cause for celebration 🎉.
Today, we announced the FDA approved a management option for patients living with PIK3CA-Related Overgrowth Spectrum (PROS). This is a turning point for people living with PROS, and we are excited to share this moment with you.
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RT @RaqPeck: 📣 7 days to go until #RareDiseaseDay! .Want to know more about the incredible world of #rarediseases? Then follow #RareDiseas….
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#LiveLifeToTheFullest. ☀️ George’s motto “Live Life to the Fullest” also came with some great advice, “Don't be afraid to share with friends. allow family and friends to help you. do as much as you can and educate others about your condition.” .– George
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“Love is really the most important thing when it comes to living, with or without a rare disease. The support that comes from love makes a lot of the hard days easier.” -Riley. #RDD2022 #EverydayIsRareDiseaseDay #CLOVESLifeMotto
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RT @NeenaNizar: Let's flood @Twitter with Faces Of Rare from around the world. Post a pic of your loved one, and name of RD, and a fun fact….
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RT @CLOVESSyndrome: #LookAtTheBigPicture.“When things don't go as planned, I remind myself to look at the big picture and find the positive….
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RT @NeenaNizar: Often we feel exhausted sharing our #RareDiseaseTruth but as hard as it is, sharing allows others to learn. For change to….
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RT @CLOVESSyndrome: #LetsDoIt. “You are not alone. It’s not always easy but someone out there shares your stress and anxiety and knows how….
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RT @CLOVESSyndrome: We’re pleased to be supporting the 2nd year of the Vascular Anomalies Communication (VACOM) Research Study with @Sisk_M….
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