Top Tweets for #RareAndReal

Sarah Potter @storyofthelotus

over 3 years ago

#RareandReal has been a rallying cry for the AFM community the last few years. It’s not just about the numbers, it’s the uncertainty, and unknowns part of the journey. To follow the latest updates for the film, sign up at https://t.co/V5ivbtRnFz

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over 3 years ago

#RareandReal has been a rallying cry for the AFM community the last few years. It’s not just about the numbers, it’s the uncertainty, and unknowns part of the journey. To follow the latest updates for @AFMfilmdoc sign up at https://t.co/iZheK842sg

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over 3 years ago

Check out our podcast chat with the incredible @OnceUponAGene as we talk about rare disease, grief, and storytelling. https://t.co/DgGgkjw5dV #knowafm #raredisease #rareandreal #storytelling

AFMfilmdoc's tweet photo. Check out our podcast chat with the incredible @OnceUponAGene as we talk about rare disease, grief, and storytelling. https://t.co/DgGgkjw5dV #knowafm #raredisease #rareandreal #storytelling https://t.co/xXpNsZHFva

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CDC Director @CDCDirector

about 4 years ago

Critical Update from @CDCgov. #thisisAFM #endAFM #acuteflaccidmyelitis #rareandreal

about 4 years ago

New @CDCgov HAN: Pediatric hospitalizations with severe respiratory illness from rhinovirus and/or enterovirus increased in August. Clinicians: ➡️Consider EV-D68 in pediatric patients with acute, severe respiratory illness ➡️Be aware of potential increase in AFM cases

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Amy Rauscher @MrsRauscherCPES

over 4 years ago

Big thanks to @TISDCES and @TISDCESPTO for supporting the AFMA! We’re ready to keep supporting and advocating for families affected by AFM. #thisisAFM #endAFM #acuteflaccidmyelitis #rareandreal

over 4 years ago

Thank you to Braden and Mrs. Scott for educating us about AFM as we raise money for the Acute Flaccid Myelitis Association! @TISDCES #CESStrongerTogether

MrsRauscherCPES's tweet photo. Thank you to Braden and Mrs. Scott for educating us about AFM as we raise money for the Acute Flaccid Myelitis Association! @TISDCES #CESStrongerTogether https://t.co/WYS0MsnAnb

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over 4 years ago

In 1 week we find out if we met our $100k goal or all the money goes back in the pockets of our generous donors. It matters to us that people with AFM and people going through their own loss feel seen. Be a part of this journey with us: https://t.co/PMip33eZDa #rareandreal

AFMfilmdoc's tweet photo. In 1 week we find out if we met our $100k goal or all the money goes back in the pockets of our generous donors.

It matters to us that people with AFM and people going through their own loss feel seen.

Be a part of this journey with us: https://t.co/PMip33eZDa

#rareandreal https://t.co/6aHQn9pO7j

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over 4 years ago

Today we are highlighting our good friends at Acute Flaccid Myelitis Association @helpAFMA Read their story below! As of right now we need 168 more backers to unlock our $10k donation. BE THE NEXT BACKER AT https://t.co/PMip33wB1K #afm #afma #rareandreal #documentary #wtlb

AFMfilmdoc's tweet photo. Today we are highlighting our good friends at Acute Flaccid Myelitis Association @helpAFMA

Read their story below!

As of right now we need 168 more backers to unlock our $10k donation. BE THE NEXT BACKER AT https://t.co/PMip33wB1K

#afm #afma #rareandreal #documentary #wtlb https://t.co/NrD4mcnEnz

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WBBM Newsradio @WBBMNewsradio

over 4 years ago

And… we’re off! To the press, that is. We got a cool radio spot this week with WBBM! BE A PART OF MAKING SCOTT’S VISION BLOOM AT https://t.co/PMip33wB1K #afm #rareandreal #Naperville #Documentary #Filmmaking

over 4 years ago

A Naperville woman is working to finish the documentary started by her late husband, @newsnance reports. https://t.co/bFjwwEmT8V

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over 4 years ago

INTRODUCING - Becky Sansbury - Author (@AftrTheShock) We have officially adopted her as our “Lotus Grandma” 🌸 BRING BECKY'S EXPERTISE AND THOUGHTFULNESS TO THE SCREEN BY CONTRIBUTING AT https://t.co/PMip33wB1K !!! #NationalCaregiversDay #rareandreal #whenthelotusblooms

AFMfilmdoc's tweet photo. INTRODUCING - Becky Sansbury - Author (@AftrTheShock)

We have officially adopted her as our “Lotus Grandma” 🌸

BRING BECKY'S EXPERTISE AND THOUGHTFULNESS TO THE SCREEN BY CONTRIBUTING AT https://t.co/PMip33wB1K !!!

#NationalCaregiversDay
#rareandreal
#whenthelotusblooms https://t.co/cl2ZrdFLhZ

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Sarah Potter @storyofthelotus

over 4 years ago

Are you a behind the scenes fanatic like us? With your generous contribution of $50 or more, you'll be granted special access to some of our BTS content. See our other perks and find out how to contribute to our Kickstarter: https://t.co/6soQJLZhYX #afm #rareandreal

AFMfilmdoc's tweet photo. Are you a behind the scenes fanatic like us? With your generous contribution of $50 or more, you'll be granted special access to some of our BTS content. See our other perks and find out how to contribute to our Kickstarter: https://t.co/6soQJLZhYX

#afm #rareandreal https://t.co/VR0SrzL3MQ

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over 4 years ago

I’ve been pouring all I have into making @LotusBloomsFilm a reality, a documentary film my husband began before his unexpected passing. Tomorrow I take a big step toward that goal and I just want him here to reassure me everything will be ok. #rareandreal #documentary #grief

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Matthew R. Vogt @VogtVirusLab

over 4 years ago

Thank you so much @VogtVirusLab! I love seeing Alfredo out in the world. #thisisAFM #endAFM #acuteflaccidmyelitis #rareandreal

over 4 years ago

I finally got around to buying this. Great work, @GreatScottSeven! This story is meant to help understand #AFM, the polio-like disease we study. I would 💯 give this to any child/family with this diagnosis. https://t.co/TWu1QMtJAv benefits from book sale proceeds, too

VogtVirusLab's tweet photo. I finally got around to buying this. Great work, @GreatScottSeven! This story is meant to help understand #AFM, the polio-like disease we study. I would 💯 give this to any child/family with this diagnosis. https://t.co/TWu1QMtJAv benefits from book sale proceeds, too https://t.co/1kPMVLY8WM

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Karen Swallow Prior (Notorious KSP) @KSPrior

almost 5 years ago

Acute Flaccid Myelitis is also a disease caused by a virus that leaves children with permanent paralysis and relying on machines to breathe. There is no vaccine. #thisisAFM #endAFM #acuteflaccidmyelitis #rareandreal

almost 5 years ago

I’m seeing a lot of misinformation being spread about the polio vaccine. (From an article by Jessica Roy in the Los Angeles Times)

KSPrior's tweet photo. I’m seeing a lot of misinformation being spread about the polio vaccine. (From an article by Jessica Roy in the Los Angeles Times) https://t.co/SEH4HrTTAv

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Jenn Salverda @SallyJ2918

about 5 years ago

I have been waiting for this book since I heard it was in the works. Cannot wait to read at bedtime! #RepresentationMatters #acuteflaccidmyelitis #rareandreal #alfredosmagicwand

SallyJ2918's tweet photo. I have been waiting for this book since I heard it was in the works. Cannot wait to read at bedtime! #RepresentationMatters #acuteflaccidmyelitis #rareandreal #alfredosmagicwand https://t.co/a4266XDpnc

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about 5 years ago

I wrote a book! Check out the book trailer and buy one million copies. As my six year old says: please and thank you. https://t.co/E8tpbNzdDp #thisisAFM #endAFM #acuteflaccidmyelitis #rareandreal @helpAFMA

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about 5 years ago

This logic hurts. People desperately want reassurances of safety. My son has an underlying condition so his negative outcome would be acceptable? It's really not. #destinationexcellence #destinationdelta #acuteflaccidmyelitis #rareandreal #thisisAFM

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over 5 years ago

We have the very best parents and clinicians leading the charge for @acuteflaccidmyelitis! #afm #thisisAFM #endAFM #acuteflaccidmyelitis #rareandreal

over 5 years ago

Massive thanks to the efforts of @RRobertseHealth, @kmess44 and Dr. Janell Routh in establishing a unique ICD code for #acuteflaccidmyelitis. 👏👏👏 Post about their efforts here: https://t.co/ybZdSvqVEV

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