• Julie Anne Dick posted a new activity comment 1 month, 2 weeks ago

    I just realized you’re the first person with cf I’ve spoken to! I am friends with a few mom’s with kids my son’s age (just phone friends:)), but it really is helpful to have others who understand all your fears and daily routine. I don’t have Facebook or IG. I thought I didn’t have time for those things before I became a mom, and now I’m like NO…

    [Read more]

  • Julie Anne Dick posted a new activity comment 1 month, 2 weeks ago

    I may not be able to comment much as a parent here, but I appreciate any little window for me to absorb as much info about cf as I can. It’s strange to be told it’s an exciting time for cf research when you’re trying to wrap your brain around such a complicated diagnosis, but we are so grateful for all the work that has been done. Science really…

    [Read more]

    • Of course, no worries on being able to comment or not. I’m sure it’s strange to hear that it is so exciting right now, especially when in the background CF is so complicated in itself and has such a nefarious history. And, that’s totally valid to feel all the emotions that surface. I’m on one of the newest trials and my lungs have changed in…

      [Read more]

    • Also, if you’d like me to link you to some parents, let me know. I can network ya without problem. Whether that be my mom or a few other parents I know out there.

      As a CF patient, I think it’s important to let you guys know that you rock and you guys become our rocks and biggest teachers and advocates. And, we pick up on it <3

      • I just realized you’re the first person with cf I’ve spoken to! I am friends with a few mom’s with kids my son’s age (just phone friends:)), but it really is helpful to have others who understand all your fears and daily routine. I don’t have Facebook or IG. I thought I didn’t have time for those things before I became a mom, and now I’m like NO…

        [Read more]

    • Julie Anne Dick posted a new activity comment 1 month, 3 weeks ago

      Hi Luisa! He turned 2 in March and was diagnosed at birth.
        • Aw! A little one 🙂 The future of CF science is becoming really exciting, and I know he’ll benefit from these amazing drugs coming out.
            • I may not be able to comment much as a parent here, but I appreciate any little window for me to absorb as much info about cf as I can. It’s strange to be told it’s an exciting time for cf research when you’re trying to wrap your brain around such a complicated diagnosis, but we are so grateful for all the work that has been done. Science really…

              [Read more]

              • Of course, no worries on being able to comment or not. I’m sure it’s strange to hear that it is so exciting right now, especially when in the background CF is so complicated in itself and has such a nefarious history. And, that’s totally valid to feel all the emotions that surface. I’m on one of the newest trials and my lungs have changed in…

                [Read more]

              • Also, if you’d like me to link you to some parents, let me know. I can network ya without problem. Whether that be my mom or a few other parents I know out there.

                As a CF patient, I think it’s important to let you guys know that you rock and you guys become our rocks and biggest teachers and advocates. And, we pick up on it <3

                • I just realized you’re the first person with cf I’ve spoken to! I am friends with a few mom’s with kids my son’s age (just phone friends:)), but it really is helpful to have others who understand all your fears and daily routine. I don’t have Facebook or IG. I thought I didn’t have time for those things before I became a mom, and now I’m like NO…

                  [Read more]

          • Julie Anne Dick became a registered member 1 month, 3 weeks ago

            • Hey Julie! How are ya?

              I wanted to introduce myself — I am Luisa and I have CF and I am also a forum moderator with @tre-larosa. Glad to have you here. I see you are a parent — how old is your child?

                • Hi Luisa! He turned 2 in March and was diagnosed at birth.
                    • Aw! A little one 🙂 The future of CF science is becoming really exciting, and I know he’ll benefit from these amazing drugs coming out.
                        • I may not be able to comment much as a parent here, but I appreciate any little window for me to absorb as much info about cf as I can. It’s strange to be told it’s an exciting time for cf research when you’re trying to wrap your brain around such a complicated diagnosis, but we are so grateful for all the work that has been done. Science really…

                          [Read more]

                          • Of course, no worries on being able to comment or not. I’m sure it’s strange to hear that it is so exciting right now, especially when in the background CF is so complicated in itself and has such a nefarious history. And, that’s totally valid to feel all the emotions that surface. I’m on one of the newest trials and my lungs have changed in…

                            [Read more]

                          • Also, if you’d like me to link you to some parents, let me know. I can network ya without problem. Whether that be my mom or a few other parents I know out there.

                            As a CF patient, I think it’s important to let you guys know that you rock and you guys become our rocks and biggest teachers and advocates. And, we pick up on it <3

                            • I just realized you’re the first person with cf I’ve spoken to! I am friends with a few mom’s with kids my son’s age (just phone friends:)), but it really is helpful to have others who understand all your fears and daily routine. I don’t have Facebook or IG. I thought I didn’t have time for those things before I became a mom, and now I’m like NO…

                              [Read more]

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