DanielleLoweCipriani

Listener, partner and collaborator supporting and innovating with chronic care communities in their day to day lives.

[Cystic Fibrosis Foundation @CF_Foundation]

"Although painting started out as a hobby, it has also become my escape. When I’m sitting at my easel, paintbrush in hand with music blasting, I don’t think about PFTs and treatments or wonder when I could be hospitalized again. Art is my therapy." https://t.co/tAykpyKux0

[DanielleLoweCipriani @dlenalowe]

This is such an awesome initiative! If you’ve known anyone with ALS or another disease that stole their voice imagine how this could have changed your and their life and brought such joy! https://t.co/zJNJysL0vS

[The ALS Association @alsassociation]

Today, we're thrilled to unveil Project Revoice, a new initiative to help people with ALS record and recreate their own voices. It's an evolving project and will take some time, but you can learn more at https://t.co/4uf40NjfGn.

[DanielleLoweCipriani @dlenalowe]

Thank you @smelis73 @cherizkunkel and Danny Bessette for sharing. The power of this community is incredible! #CFFVLC

[Julie Riedy @julie_riedy]

We are committed to giving more support and much of that is “designed for people with CF, by people with CF.” - Dr. Al Faro @CF_Foundation #CFFVLC

[DanielleLoweCipriani @dlenalowe]

It’s not too late! I participated in the online day of action you can too! https://t.co/sFvEDKcMzu

[Cystic Fibrosis Foundation @CF_Foundation]

When you speak, lawmakers listen. Learn how you can get involved in our online day of action: https://t.co/7bF6fLz3bj

[DanielleLoweCipriani @dlenalowe]

@SenCoryGardner please protect access to adequate, affordable care for my friends living with cystic fibrosis!

[DanielleLoweCipriani @dlenalowe]

@RepMikeCoffman please protect access to adequate, affordable care for my friends living with cystic fibrosis!

[DanielleLoweCipriani @dlenalowe]

@SenBennetCO thank you for serving our CO community. Please don’t stop supporting the CF community too. Please protect access to adequate, affordable care for my friends living with cystic fibrosis!

[Steve Gleason - "Live Impossible" @SteveGleason]

Stephen Hawking inspired me before ALS - to keep asking questions, seeking answers, and understanding the cosmic perspective. But since ALS, he saved my life with his example - people diagnosed with ALS can continue to live productive & purposeful lives for decades.
-SG

[DanielleLoweCipriani @dlenalowe]

Check this podcast out. Interesting take on illness and life. Hosted by a group of 3, one living with CF. They take on challenging conversations with humor, while still promoting mental health. Inspired to have met the crew at the live recording! https://t.co/vpA6MsC2bI

[Sickboy Podcast @sickboypodcast]

It’s up Y’all! https://t.co/sMiot6MvEp

[DanielleLoweCipriani @dlenalowe]

Thank you @MarissaBenchea for teaching me so much! @Love_To_Breathe thank you for inspiration! Spread the power of connection! https://t.co/btLmId1HXG

[DanielleLoweCipriani @dlenalowe]

@DougRupertMPH thank you for teaching us so much. Can’t wait to continue learning with you! https://t.co/G6Nhjq3o8X

[Doug Rupert @DougRupertMPH]

Honored to serve on #SXSWHealth panel discussing online health communities w/ @dlenalowe @MarissaBenchea @rzeiger. Next step: More research on OHC value!

[Vicky Cory @VCory]

CF patients can’t be in the same room, so BreatheCon online conference was born. @MarissaBenchea. This is a great example of finding a solution to fit the patient instead of forcing patients to fit inside an established social platform #intouchwith #SXSW #SXSW2018

[imre health @imrehealth]

“Only a person living with #cysticfibrosis can really understand,” @dlenalowe / @MarissaBenchea graciously shares an emotional account about her life #empathy #sxswhealth

[Cystic Fibrosis Foundation @CF_Foundation]

Next week, more than 200 advocates from the #cysticfibrosis community are heading to D.C. for March on the Hill! You can join us at home & make the voice of the community heard by participating in our online Day of Action! https://t.co/KZP1UFwD1v

[WIRED @WIRED]

Twitter launched a new initiative today to find out exactly what it means to be a healthy social network in 2018. So, what does that even look like? https://t.co/wDIcRKS1OL

[Cystic Fibrosis Foundation @CF_Foundation]

ICYMI, tomorrow is our next CF MiniCon on self-care and relationships! Connect online with adults with #cysticfibrosis and others in the CF community about how they make time for self-care and more: https://t.co/Du3kTB9Odf

[DanielleLoweCipriani @dlenalowe]

And excuse this CO boy’s language because...GOLD...for a 17 year old is
the.... https://t.co/nenlNP6866

[BBC Sport @BBCSport]

Life will be very different for 17-year-old Red Gerard after #Pyeongchang2018

https://t.co/xsWXHtc77R #bbcolympics

[DanielleLoweCipriani @dlenalowe]

Talk about giving a voice! Steve Gleason enduring voices is permanent protecting speech generating devices for people with degenerative diseases. https://t.co/X2yDL83ymB

[Steve Gleason - "Live Impossible" @SteveGleason]

The Steve Gleason Act is permanent folks. Thanks everyone who worked hard to allow people with disabilities stay productive. Thanks to @BillCassidy @amyklobuchar @SteveScalise @cathymcmorris @CedricRichmond @RepJohnLarson for your leadership. Thanks @potus for signing.
-SG

[DanielleLoweCipriani @dlenalowe]

This is the first virtual event for both people with CF and family members. If you’re a person with CF, parent, sibling, spouse or friend, join and let us know your thoughts to make these events positive and effective for an audiences with a variety of experiences. https://t.co/cRTw2Nmbzw

[Cystic Fibrosis Foundation @CF_Foundation]

Managing the emotional and physical aspects of #cysticfibrosis is *a lot* of work. Talk with other adults with CF and their family members and share how you make time for self-care at our next virtual CF MiniCon on 2/27! https://t.co/i6l9VKAUGv