Sofia's Helping Hand

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/360… #EDS #POTS #MCAS #Marfan #MarfanWalkforVictory

@BobbleHeadZoe @HR4peopleinpain @ZebraOrphans @AChVoice @Nashkitty66 I am learning how to do twitter can you send us a message on Facebook so we can learn more please

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

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-dan… #EDS #HSD

See this Instagram photo by @sofiashelpinghand instagram.com/p/CTnVeA_lm6y/…

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/SofiasHelpingH… give.marfan.org/sofia #SofiasHelpingHand #ehlersdanlossyndrome #zebrastrong #determination #marfan

@sofiashelpinghand/video/6956203263465213189?sender_device=pc&sender_web_id=6955982865315071494&is_from_webapp=v1&is_copy_url=0" target="_blank" rel="nofollow noopener">tiktok.com/@sofiashelping… #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #zebras #zebrastrong #determination #scoliosis #syringomyelia #POTS #MCAS

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-wr…

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

#pleaseaskmeaboutmyinvisibleillness #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #zebras #zebrastrong #determination #scoliosis #MCAS #POTS #syringomyelia

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

Just posted a video instagram.com/p/CNAmi69jtfS/…