• Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

    Hey Julie! Love having ya here — I am Luisa, and I am 26 and I also have CF. I moderate the forums and work with our social media. Would love to hear a bit of your story, and should ya need anything from me, feel free to reach out! If you like social media, our IG page is pretty awesome, too! @cfnewstoday

    Luisa!

    • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

      Hey Kristy! Love having ya here — I am Luisa, and I am 26 and I have CF. I also moderate the forums and work with our social media. Would love to hear a bit of your story, and should ya need anything from me, feel free to reach out!
      • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

        Hey Natalie! Love having ya here — I am Luisa, and I am 26 and I have CF. I also moderate the forums and work with our social media. Would love to hear a bit of your story, and should ya need anything from me, feel free to reach out!
        • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

          Hey Rich! I am Luisa and I am 26 and I have CF! I am a moderator here, and I also manage our social media 🙂 I love seeing parents engage, and if ya need anything from, feel free to reach out. My co-moderator @jennifer-livingston is also awesome and easy to talk to, too!

          Luisa

          • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

            Hey Rae, how are ya! I am Luisa and wanted to introduce myself: I have CF and am 26, I also coordinate a lot of our social media, and moderate the forums a bit! I see you are family to someone with CF, do you mind me asking who! Let me know if ya need anything, I am here to help. @jennifer-livingston is also one of our moderators, and is…

            [Read more]

          • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

            Hey Clarence! Thanks for joining our forums family! I am Luisa and I am 26 and I have CF. I also moderate here a little bit, but mostly work with all our social media. How are you doing, though? Let me know if ya have any questions or anyway we can help. @jennifer-livingston is also a moderator here, and is AWESOME!

            Luisa

            • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

              Hey Melanie! Welcome to our forums family 🙂 I am Luisa and I also have CF (I’m 26!). I also manage our social media and love to collab ideas with our community. Let me know if you have any questions or topics of discussion you want to put out there. Would love to know if you’re eligible for Trikafta!

              Luisa
              IG: @cfnewstoday

              • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

                Hey Tabitha — how are you! I am Luisa and I also have CF and am one of the moderators here 🙂 Let me know if ya need anything or have any questions! We also have a really active IG page if ya want to follow @cfnewstoday 🙂
                • Luisa Palazola posted a new activity comment 1 month ago

                  AIMEEE! We meet again — haha! This is actually one of my jobs, to forum moderate here and to Community Manage for CF News Today altogether. I’m glad you joined our forums! <3 <3
                  • Luisa Palazola posted a new activity comment 1 month ago

                    Hi! I am Luisa and I am one of the Forum Moderators for CF News. I actually have CF 🙂 I see you work in the medical field, I am guessing with CF! I hope you’re well
                    • Yesterday I got a screenshot of the FDA’s approval for what is now Trikafta: I’ve been on the study for the last 10 months — and hearing an actual name (aside from triple combo) is bonkers to me. What’s even more bonkers is how I feel: how my numbers have changed, and the ability to wake up and breathe without a slew of mucus const…[Read more]

                    • Luisa Palazola posted a new activity comment 2 months, 1 week ago

                      May you remind me of the name of your books, and I’ll be sure to look them up. And, jeez — post WWII was such an apocalyptic space for the world, toppled with the news of CF… I can imagine you took on that identity to not want to have CF.
                        • The three books published since my transplant are :Bain’s New York. The City in News Pictures, 1900-1925; Sunny Land. Pictures from Paradise; and Some of Us. (The last two are collections of my photographs. You can see some of my pictures on my website: michaelcarlebach.com
                        • Hi @rhealawton I am so sorry to hear about your husband, but what an incredible life — 51 years old. Thank you for sharing, but actually the photo is not appearing! You’re more than welcome to try reposting in a different format, or should you want to add my on social media (facebook or IG) and send me a photo through there, I would love to post for ya!

                        • Proteostasis Therapeutics or PTI Biotech is a innovative biopharmaceutical company that is helping develop novel CFTR therapies, and more innovative methods of treating CF. Their big theme is approaching CF care from all angles of a patient’s care and also from different parts of the world. I was asked to speak a little on my story with CF and…[Read more]

                        • Last night I was sharing my thoughts on Instagram stories, as I often do. I began reminiscing about childhood and all the things I used to innocently think. It started a dialogue with my CF friends, and we began sharing things related to how we saw CF when we were little, here are two of my absurd childhood thoughts:

                          1. I was diagnosed late with…[Read more]

                        • Luisa Palazola posted a new activity comment 2 months, 1 week ago

                          Hi Kristy! I hope you are well 🙂 I wanted to take a moment to introduce myself, I am Luisa and I am 26 years old — and I also have CF! I also am one of the forum moderators here, along with @jennifer-livingston ! If you need anything, don’t hesitate to reach out 🙂
                          • Luisa Palazola posted a new activity comment 2 months, 2 weeks ago

                            I’m well! Head ache-y today, haha! But, on this particular forum, I don’t think so — but, we are so welcoming of others! However, I also manage our social media, and through Instagram, I’ve met various people from Australia with CF. And, yes — if you sift through the different forum topics, you’ll see we’ve got all sorts of discussions on…

                            [Read more]

                          • Luisa Palazola posted a new activity comment 2 months, 2 weeks ago

                            Oh my gosh, that’s so cool. Are your books available to order on Amazon. And, I can’t imagine what it is like to lose four siblings. CF is brutal, especially when the medications and therapies haven’t been there. Also — I will be in North Carolina next month, but I am going to Charolette!
                              • I think all of my books are available through Amazon, though I haven’t looked recently.
                                When we were all growing up there wasn’t much talk about CF in the family, and about the only treatments available were antibiotics and back-slapping percussion. Terrible for our parents who had all those babies after WWII only to find out that the…

                                [Read more]

                                • May you remind me of the name of your books, and I’ll be sure to look them up. And, jeez — post WWII was such an apocalyptic space for the world, toppled with the news of CF… I can imagine you took on that identity to not want to have CF.
                                    • The three books published since my transplant are :Bain’s New York. The City in News Pictures, 1900-1925; Sunny Land. Pictures from Paradise; and Some of Us. (The last two are collections of my photographs. You can see some of my pictures on my website: michaelcarlebach.com
                                • Have you seen these stats before, our team at CF News Today came up with this neat infographic of strides recorded by the Cystic Fibrosis Foundation. And, I think it’s pretty phenomenal:

                                  For, me it’s boggling to realize that I am one of those people. I am one of those people who has not only benefitted from the newer medications and…[Read more]

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