Dorothy Poppe

Executive Director of @CSFinfo. Lifelong advocate for #Chiari, #syringomyelia and related disorder awareness.

[Dorothy Poppe @DorothyPoppe]

@SchLeague @mystlukes Anna Burke

[Dorothy Poppe @DorothyPoppe]

@Rarity_Courage Happy to make a difference for families everywhere!

[Michelle 💖 @michellepiazzax]

So excited! https://t.co/nWpVHi9ypR

[Dorothy Poppe @DorothyPoppe]

In Washington DC today to meet with my Congresspersons and advocate for @PCORI with @CSFinfo and our amazing advocacy partners!

@DysSupport @TheEDSociety #DURAbleBrainsFoundation #ChiariConnectionInternational

[Bobby Jones Classic @bobbyjones4csf]

Play the home of the @playofffinale at @eastlakegc and honor the life of #BobbyJones as we raise money for research into the condition that greatly affected Jones later in his life: #syringomyelia. Visit: https://t.co/FlgArisyUJ

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

The CSF Spring Research Meeting is getting underway! Lots of familiar and new faces to work on problems plaguing patients and families with #Chiari, #syringomyelia, #hypermobility, #tetheredcord syndrome and related disorders.

[Dorothy Poppe @DorothyPoppe]

Happy to be at @OrphanConf this week to advocate for better treatments in the fields of #Chiari, #syringomyelia and related disorders. Looking forward to collaborating with organizations and companies from around the world! #WODCUSA

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

Can't even explain how excited we are to finally announce #uniteatthehill2018!! Includes a Sat. reception, a Sun. conference & a Mon. march to Capitol Hill! Learn more/register now: https://t.co/qxpo2K6XTX

#Chiari #syringomyelia #EhlersDanlosSyndrome #dysautonomia #advocacy

[Bobby Jones Classic @bobbyjones4csf]

Raising awareness of #syringomyelia, #Chiari and related disorders at #TheMasters this week. 🏌️‍♂️⛳️💛

[Dorothy Poppe @DorothyPoppe]

Having a great time with friends at #TheMasters celebrating the great game! 🏌️‍♀️⛳️

[Bobby Jones Classic @bobbyjones4csf]

"As a young mom with a very sick child, I learned that #BobbyJones and my four-year-old son had something in common. They were both diagnosed with #syringomyelia." Great piece just in time for #Masters week from @DorothyPoppe in @WhereToGolfNext: https://t.co/Mxalo0b4Tn

[Bobby Jones Classic @bobbyjones4csf]

Listen to @bkatrek & @johnmaginnes On Tap tonight at 6:30pm ET to hear @CSFinfo Chairman Paul Farrell talk about #Chiari, #syringomyelia, related disorders and the 2018 #BobbyJonesClassic! Tune in on XM Channel 92, Sirius Channel 208.

[Dorothy Poppe @DorothyPoppe]

Can’t wait for all the surprises in store this year! https://t.co/bqInl8QbyT

[Bobby Jones Classic @bobbyjones4csf]

We’re gearing up for the 2018 #BobbyJonesClassic! Visit https://t.co/rxKEzD0VZz to learn how you can play @eastlakegc like the great #BobbyJones!

#golf #Chiari #syringomyelia https://t.co/uM2x3U6E53

[East Lake Golf Club @eastlakegc]

Good night from East Lake. Gates for the 2017 #TOURChampionship open tomorrow.

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

Follow the #BobbyJonesClassic golf tournament to learn more about this event CSF hosts every May which raises $$ for research/education! https://t.co/mQKcOcUqNa

[Dorothy Poppe @DorothyPoppe]

I just donated to this event. Visit the event website and register or donate today. https://t.co/iH1Xr977bj

[Dorothy Poppe @DorothyPoppe]

#ChiariAwarenessMonth! CSF is in Bethesda making sure #Chiari is on the radar of NIH/NINDS!

[Dorothy Poppe @DorothyPoppe]

@Twitter CSF Chiari Awareness: NIH/NINDS Non-Profit Forum! We're making sure your voice is heard! #CSF

[Dorothy Poppe @DorothyPoppe]

I am so happy that we were able to bring the voice of #Chiari, #syringomyelia and related disorder patients to this meeting. ❤️

[Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf]

"The card I got is actually perfect to introduce my whole talk. It must have been be fate." - Dr. Loth #CSFDynamics