Top Tweets for #SWFWarrior
Together with our international counterparts we would like to introduce Sturge Weber International Day! #sturgeweberuk #sturgeweber #sturgewebersyndrome #sturgeweberstrong #sws #swfwarrior
π NEW BLOG POST: Victim or Victor? 3-minute Read: https://t.co/HrhyLioufH
#SturgeWeberSyndrome #SWFUnited #SWFWarrior #SturgeWeberFoundation #PortWineStain #Birthmarks #Seizures #PortWineBirthmark #RareDisease
This is our WHY, our mission, our reason! Join us today and let's conquer the world, one donation at a time.
π https://t.co/PS9ebQbKEi
TEXT-TO-DONATE coming soon!
#sturgewesberawareness #sturgewebersyndrome #swfunited #SWFWarrior #sturgeweberfoundation #portwinestain
π Weβve just earned our 2023 Platinum Seal with @CandidDotOrg! π
π https://t.co/TZs6SDnZmy
#goldstar #sturgeweberawareness #candiddotorg #NonprofitProfile #SWFWarrior
π Tell us why you β€οΈ The Sturge-Weber Foundation!
π 3 min survey
β° DEADLINE: October 31
π https://t.co/OLLTZGsjvf
#sturgewebersyndrome #swfunited #SWFWarrior #portwinestain #seizures #portwinebirthmark #raredisease #KlippelTrenaunaySyndrome #epilepsy #glaucoma
πIt was a heartwarming gathering of fellow warriors, families, and experts at ππ€ SWFIRN/CCN meeting!πͺβ¨β€οΈ #unstoppable!
β€οΈ Event Sponsor: @ucb_news
β€οΈ Duke Medical School
β€οΈ*Funding (in part) by NINDS
#sturgewebersyndrome #swfunited #SWFWarrior
Rylan Connell walked right up to the banner, pointed at it, and said, "Just like me!" β€οΈ
Thank you to our wonder sponsors: @ucb_news
Hosting the event is Renaissance Charlotte SouthPark Hotel @marriottbonvoy
#swfcharlotte #sturgewebersyndrome #swfunited #SWFWarrior
Let's talk about WHY our foundationβs work matters... just to name a few.
We need your help to continue our work.
Please donate today at https://t.co/bTT0L20OqK
#support #sturgewebersyndrome #swfunited #SWFWarrior #portwinestain #KlippelTrenaunaySyndrome #epilepsy #glaucoma
To all our Warriors laboring hard to spread awareness and raise money for funding Sturge-Weber syndrome research, we appreciate you! β€οΈπ
#sturgewebersyndrome #swfunited #SWFWarrior #sturgeweberfoundation
π Read and watch the video:https://t.co/WaBnfpcliP
@abilityexp @news4sa
#cycling #journeyofhope #sturgewebersyndromeawareness #swfunited #SWFWarrior #sturgeweberfoundation #portwinestain #birthmarks #seizures
π Caregivers, it's your turn! Join us for a chat on Thursday, June 22 with Luis Sandoval, Ph.D., SWF Task Force Leader for Mental Health.
π June 22, 2023
π 7:30 pm - 8:30 pm EST
π https://t.co/NAcqSUZYB3
#sturgewebersyndrome #swfunited #SWFWarrior #SWFWarriorMama #OurWhy
π WE HAVE EXCITING NEWS! We have a new look on our website! π
π https://t.co/bTT0L20OqK
And, that's not all. We will launch more surprises in Fall 2023. β€οΈ
#sturgewebersyndrome #swfunited #SWFWarrior #sturgeweberfoundation
π DON'T FORGET! π Join us tomorrow for our Educational Mini-Summit!
π Virtual Event
π Saturday, June 3
π 12:00-3:00 pm EST
π https://t.co/mKJlo9riee
Sponsored by @ucb_news
#sturgewebersyndrome #swfunited #SWFWarrior
π This week's SWF Million Miles Walk Warriors...
It's not too late to join in the fun! Sign up here: https://t.co/hNkB7bDkXF and let's collectively walk a million miles for Sturge-Weber syndrome.β€οΈ
#MillionMilesWalk #SWFMillionMiles #SWFMonthofAwareness #SWFWarrior
π Become an SWF Warrior Today! Give so we can continue to support SWS patients, caregivers, and researchers. https://t.co/ZYklIuXXGp
#SWFWARRIOR #SWFMonthOfAwareness #IAmAWarrior
π Pictures from the Sturge-Weber Syndrome Family Education Day!
Shout out to M. Sahin, M. Shirley, A. Shah, M. Chiu, K. Boyer, C. Juhasz, A. Pinto, & J. Bischoff AND Thank you @BostonChildrens for all you do for the SWS community. β€οΈ
#SWFWARRIOR #SWFMonthOfAwareness
Like this image? Download it and share.
#SWFWARRIOR #SWFMonthOfAwareness #IAmAWarrior #sturgewebersyndrome #swfunited
π Enter to win this gift box from @Beautifully Blemished ONLY ON INSTAGRAM.
π Go to The SWF Instagram, find the original post, and nominated someone to win.
π Three winners
π May 31
#SWFWARRIOR #SWFMonthOfAwareness #IAmAWarrior
#sturgewebersyndrome #swfunited
π Help us π SWS in its tracks. Take the $10 GNAQ Recurring Donation Challenge today to support
π VITAL RESEARCH
π SWS ADULT CARE
π EDUCATIONAL PROGRAMS
π DONATE: https://t.co/PS9ebQbKEi
#SWFWARRIOR #SWFMonthOfAwareness #IAmAWarrior
π On this day in 2013, researchers discovered the GNAQ gene mutation that causes Sturge-Weber syndrome. It was a momentous day in SWS history.π
Thank you Helen Kim for your wonderful message. π
@rarediseasesnet
#SWFWARRIOR #SWFMonthOfAwareness #IAmAWarrior
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