My Marfan Foundation Speech at the Marfan Walk for Victory. Joining forces for connective tissue disorders. #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #determination #scoliosis #syringomyelia #POTS #MCAS #Marfan #MarfanWalkforVictory2022
I am Sofia from Sofia's Helping Hand, and I am honored to be The Marfan Foundation 2022 South Florida Teen Ambassador Chair.
Please help me support The Marfan Foundation by making a donation through my page.
give.marfan.org/fundraiser/3…
#EDS #POTS #MCAS #Marfan #MarfanWalkforVictory
Happy One Year Anniversary!!!!! Please see the video to see all the amazing things that we have been able to accomplish this year!
We do not own the rights to the music.
#SofiasHelpingHand #ehlersdanlossyndrome #marfanfoundation fb.watch/8BCXjCA_3x/ via @FacebookWatch
We all came together to celebrate Aortic Disease Awareness Week dressed in our orangey best! Check out this video of some of the faces of Aortic Disease Awareness! Didn't make the video? Share your pictures with us in the comments. fb.watch/8cnDyGmnXw/ via @FacebookWatch
Sofia's Helping Hand retweeted
We are delighted to announce The Ehlers-Danlos Society Center of Excellence program, a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide with multi-disciplinary team care. Read more:
ehlers-danlos.com/the-ehlers… #EDS #HSD
ALT Two healthcare clinicians are shown. Text reads: The Ehlers-Danlos Society Center of Excellence Program. The Ehlers-Danlos Society
My ferret and I are ready for the @MarfanFdn walk on Sunday. We can not wait to participate in person next year.
THERE IS STILL TIME LEFT TO DONATE! Help us get answers through research and support.
give.marfan.org/sofia
#SofiasHelpingHand #mafan #ehlersdanlossyndrome
We are approaching $1000 raises for the @MarfanFdn
ONLY 3 MORE DAYS TO RAISE MONEY OR JOIN OUR TEAM!
Help us raise funds for the Marfan Foundation.
give.marfan.org/SofiasHelpin…
give.marfan.org/sofia
#SofiasHelpingHand #ehlersdanlossyndrome #zebrastrong #determination #marfan
Check out Sofia's Helping Hand's team fundraising page - give.marfan.org/team/349046
Zebra White Writing Ehlers Danlos Syndrome on @Bonfire bonfire.com/zebra-white-writ…
Join the Sofia's Helping Hand team in the Marfan Virtual Walk!!!! give.marfan.org/team/349046
Zebra pile up!!!! A bunch more zebras going out today for kids with Ehlers Danlos Syndrome:)
#pleaseaskmeaboutmyinvisibleillness
#SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #zebras #zebrastrong #determination #scoliosis #MCAS #POTS #syringomyelia
Check out Sofia's Helping Hand's team fundraising page - give.marfan.org/team/349046
When your big toe keeps dislocating and your ankle hurts during hot weather you tape up, put on your ankle brace and rock cute sandals anyway. That is how I roll.
#pleaseaskmeaboutmyinvisibleillness
#SofiasHelpingHand #ehlersdanlossyndrome #scoliosis #MCAS #POTS #syringomyelia
When you wake up in pain and dislocating and your little brother and sister just want you to feel better. So my sister gives me a massage and my little brother brushes my hair. They are so cute how much they care about me.
#SofiasHelpingHand #ehlersdanlossyndrome #MCAS #POTS
