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    • #29589

      Hi Everyone,

      Please see the ‘ask’ outlined below in advance of Pulmonary Fibrosis Awareness Month this September. We’re embarking on an initiative of story-telling in hopes to raise the profile and awareness of this disease that has affected us all and could use your help. If you want to contribute, please DM me on here or email me ([email protected]) for more information!

      __________________________________________________________________

      The ask:

      The initiative is called 30 Days of PF. This is something BioNews is doing to highlight different patient and caregiver voices within our community. Contributions are all voluntary, and we’re only looking for short posts! We’ve done this same type of initiative on other rare disease sites affiliated with our parent company (“BioNews”) before, but this is the first time we’re doing it on PF. You can check out the archives from one of our sibling sites here.

      The goal of this project is to feature a person with PF (or family member, partner, caregiver) every day in September. This is a space for you to write about your experience with a particular topic, experience, or theme; and how PF has influenced that. This is a reflection of your experiences.

      At the end of September, our goal is to have a collection of different stories and experiences about  life with PF that could (hopefully) reach and help manifest optimism or empowerment for readers. The way you wish to share that experience is up to you!

      Regarding a topic, is there anything in particular you’d like to write about? Some suggestions are: independence and PF, family life, employment and PF, managing care, medication side effects etc. If you have your own ideas that is great too – feel free to scroll through the PF forums for inspiration!

      Here’s what we need from you: 

      • A photo of your choosing. Please choose a high-resolution image that we can use for Instagram! You’re welcome to send several photos.
      • 300-400 words on your chosen topic/ experience (please keep in mind that Instagram has a 450-word count!)
      • Email your content to this address: [email protected]  – When the post goes live, we ask that you share it on your social media.

      When do we need this content by?

      We’ve got some time, but I’m trying to get a head start on this initiative so that we have posts ready for September. Please try to get yours turned in by August 23rd.

      Consent: I do need your written consent to post on our site, so I’ve attached a form. You can print and sign, and DM me a picture. Or if you don’t have a  printer, this site allows you to sign electronically: https://www.pdfescape.com/

      When you’re done, save it and send it to me!

    • #29738
      Kevin Schaefer
      Keymaster

      Hey all! Just a heads up we still have plenty of room for contributors. If you’d like to share your story please email Charlene or [email protected]. Let us know if you have any questions.

      Thanks!

    • #29771
      Robin Oakman
      Participant

      I’ll be sending you something!

       

      • #29821

        @dragonflymagick

        Thank you so much, Robin! We’d love to showcase your story and very much appreciate your willingness to contribute to this initiative. We’ve had a bit of a hard time gathering stories so thank you again. I look forward to hearing your story!
        Char.

      • #29926
        Kevin Schaefer
        Keymaster

        Hey @dragonflymagick! We would love to feature your story! Please email [email protected]. Thanks!

        • #29936
          Robin Oakman
          Participant

          Working on it – will submit very soon.

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