The DESSH Foundation
@DESSHCommunity
Advocating for patients and promoting research for DeSanto-Shinawi Syndrome, a rare neurodevelopmental genetic syndrome caused by a mutation of the WAC gene.
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DeSanto Shinawi Syndrome is a rare and newly discovered genetic disorder characterized by a mutation of the WAC gene. It has been identified in less than 70 people worldwide. Discover studies, research, patient stories, and more here: dessh.org/studies-and-re…
🎉 Registration is OPEN for the 2025 DESSH Clinic & Family Conference! 🧬💙 Meet families, clinicians & researchers dedicated to DESSH syndrome. 📅 Deadline: June 13 🔗 desshclinic.com #DESSHClinic #RareDiseaseCommunity
Bidding is going great guns on this fabulous ‘Whimsical Watercolor’ by #DeSSH hero Leo from New Jersey. Visit dessh.org/rareartinfo to view and bid on your favorite pieces to support our cause and help these people living with Rare Diseases #plwrd #RareDiseaseDay
Neurodivergence 🧠 was a super power for Da Vinci, Van Gogh and Warhol 👨🎨 Art brought relief and joy to artist and audience alike ✨ With the same sentiment, let’s leverage the healing power of art this #RareDiseaseDay. dessh.org/rareartinfo
🌟 "The world needs all kinds of minds." - Temple Grandin 🌟 Like Temple Grandin says, every mind is unique, and with the right support, each one can thrive. dessh.org/donate #TempleGrandin #UnlockPotential #SupportDESSH #ForeverBrightFuture
The DESSH Foundation is overwhelmed by your generosity! #EveryDonationCounts! If you haven't had a chance to #GIVE, it's never too late to support our mission! dessh.org/donate
Today, you have the power to make a real difference. Your donation, big or small, helps accelerate research and provide needed resources to DESSH families. Together, we can create lasting change. 💙 ✨ Join us in building a Forever Bright Future! ✨ dessh.org/donate
This Thanksgiving, our hearts are full of gratitude for YOU—our incredible supporters. Thank you for standing by our side and making a difference every day. Wishing you a joyful and blessed Thanksgiving! 🦃🍁 #ThankfulForYou #DESSHCommunity
📢 The Countdown is ON! ⏳ 🌟 1 Week to Giving Tuesday! 🌟 This year, your generosity goes twice as far—thanks to a $20,000 matching challenge! 💥 💛Donate today at dessh.org #GivingTuesday #DESSHFoundation #DoubleYourImpact
📲 Follow The DESSH Foundation on ALL social platforms @DESSHcommunity! ✨ Together, we’re not just talking about change—we’re making it happen. Hit that follow button now and be part of the journey! #DESSHFoundation #CommunityImpact #MakeADifference #FollowUs
"Rare disease impact more people than cancer and aids combined." @GlobalGenes have put together facts to show the impact of living with a rare disease: 👇 ow.ly/5n4X50Qkgwl
Two Weeks to go until #RareDiseaseDay2023... Join the 300 million people living with a #RareDiease and their families around the globe, to raise awareness that targets the general public, healthcare professionals and policymakers. 👇👇👇
Important article at the NYT highlighting the struggle patients, caregivers, and organizations like ours face in the development of treatments for rare genetic diseases. Only hundreds worldwide have been diagnosed with DeSanto-Shinawi syndrome.
Since the technology for bespoke genetic drugs debuted, about two dozen patients have received the infusions — costing as much as $2 million per patient. But hundreds of millions of others live with rare genetic diseases and have no treatment options. nyti.ms/3W9zFR1
❓ Did you know there are over 6000 identified rare diseases worldwide? 👉 Download statistics like this from our website and spread the word to raise awareness for #RareDiseaseDay: cutt.ly/cYCUyc9 #RareDiseaseDay
This past Saturday was International Day of Persons with Disabilities. For #GivingEveryTuesday, let's work toward a disability-inclusive, accessible and sustainable world.
Trying something new, a go fund my lab to keep doing rare disease research. Please contribute or share with others if you can. ...and please RT! Departmental and college support is bad here, any extra support is appreciated. gofund.me/76024427
This past Saturday was International Day of Persons with Disabilities. For #GivingEveryTuesday, let's work toward a disability-inclusive, accessible and sustainable world.
Our DESSH families have a lot to be THANKFUL for this year! As Giving Tuesday ends, we wanted to make sure all of our supporters know just how much we appreciate you all! We've come a long way towards our goals, but there is still time to donate: dessh.org
On Nov 29, 2022, the whole world united for a celebration of generosity. Whether it was spreading joy, sharing our talents, or showing up for an issue you care about, on #GivingTuesday you transformed the way we think about and act on giving all year long. Thank you.
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