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    • #38175
      Jen Cueva
      Keymaster

        The theme for World PH Day this year is “United to Cure PH,” aimed at recognizing the global advances to improve the lives of people affected by PH and to find a cure for the disease.

        Over 80 groups worldwide will unite for a cure on May 5. You can find out more by reading this article from PH News. Yes, you can enjoy the chips and salsa, too.

        How will you raise awareness for World PH Day this year? Do you ask family and friends to share to help increase the reach?

      • #38176
        Jen Cueva
        Keymaster

          I usually share PH messages for Wold PH Day through my social media channels if I haven’t yet contacted my local elected officials about upcoming bills needing their support. You can find PHA’s World PH Toolkit for resources, too.

          Some of those currently ongoing is the HELP Copays Act (HR. 30) and trying to get Congress to improve access to oxygen. I’ve already contacted my local officials about both of these topics.

          If you want to join in and help with these advocacy efforts, PHAmnakes it simple. Here’s a link that will self-populate your info and a template letter that can also be personalized. You only need to add your zip code and a few other details. Check out the link below.

          PHA-Advocacy

        • #38181
          Hall Skåra
          Participant

            PHA Europe also has a toolkit. You can view it here. In addition, we have a free webinar that anyone can join. Prof. Sean Gaine will run a presentation he has called: “Work in Progress: Emerging Hope in PH”. It will be run May 4th at 7 pm CET. (Equals to 1 pm EST) Find the Zoom logon information here.

            • #38200
              Jen Cueva
              Keymaster

                Hi @hall-skara, Thanks for providing the PHA Europe Toolkit and complimentary webinar information! I hope some of us can participate and bring back insights to share with the group.

                Wishing you well during your busy times. We love hearing from you. When you have a moment, please give us an update. Stay safe, my PHriend.

              • #38302
                Jen Cueva
                Keymaster

                  @hall-skara had trouble posting the link to the webinar. He says, “I tried to write an article saying that the webinar of Prof. Sean Gain is now published on our WPHD website. It is an excellent webinar worth watching.”

                  Below is the link-
                  ONLINE WEBINAR WITH PROF. SEAN GAINE

                  Thanks, Hall, for sharing this webinar; we will check it out in the next few days.

              • #38225
                Jen Cueva
                Keymaster

                  Let’s not forget to spread awareness for World PH Day tomorrow, May 5th!

                  So, grab your margaritas, chips, salsa, tacos, and whatever else you enjoy for Cinco de Mayo and share some posts on social media or contact your local members of Congress to tell them to improve access to oxygen therapy.

                • #38226
                  Barbara Thompson
                  Participant

                    Of course, I’ll be dressed in zebra & give out lots of the zebra cards!

                    • #38235
                      Jen Cueva
                      Keymaster

                        Well, of course, you are, @barbarainmemphis! You are always the Zebra Queen in my PH mind and always look so good wearing it! I imagine people running into you in town instead of weddings which you and Chuck did for years; I envision folks chasing after you chatting, “that’s the Zebra Queen.” Hehe

                        Thanks for your continued passion and for going above and beyond to spread awareness for everyone in the PH community! How many years have you been doing this? For all long as I can remember and I was diagnosed in 2005!

                        Happy World PH Day, Y’all! Enjoy your Cinco de Mayo, too!

                        • #38246
                          Barbara Thompson
                          Participant

                            Had to go to the PCP today for a face-to-face to get my scooter replaced so I gave out a LOT of zebra cards already – and the 2023 World PH Day isn’t over yet. Love ya, @Jen!

                             

                          • #38255
                            Jen Cueva
                            Keymaster

                              Hi @barbarainmemphis, I wonder how many zebra cards you’ve given out through the years. Would you care to estimate that number for us? And I bet your guesstimate will not be anywhere near the total!

                              Hopefully, you will have your new wheels before long. Are you getting a custom zebra paint job on the new one? Maybe just periwinkle since your closet is full of zebra attire. Does Chuck give you an extra closet just for these clothes?

                              Love and hugs to you, too, my sweet PHriend!Cheers to a feel-good week ahead in Memphis!

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