Pulmonary Hypertension News Forums Forums Awareness and Advocacy How will you raise awareness for World PH Day 2023?

  • How will you raise awareness for World PH Day 2023?

    Posted by jen-cueva on May 1, 2023 at 2:51 pm

    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?

    jen-cueva replied 11 months, 2 weeks ago 3 Members · 9 Replies
  • 9 Replies
  • jen-cueva

    Member
    May 2, 2023 at 12:53 pm

    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

  • Hall Skåra

    Member
    May 2, 2023 at 5:29 pm

    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.

    • jen-cueva

      Member
      May 3, 2023 at 1:51 pm

      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.

    • jen-cueva

      Member
      May 12, 2023 at 1:28 pm

      @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.

  • jen-cueva

    Member
    May 4, 2023 at 1:46 pm

    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.

  • Barbara Thompson

    Member
    May 4, 2023 at 2:13 pm

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

    • jen-cueva

      Member
      May 5, 2023 at 11:38 am

      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!

      • Barbara Thompson

        Member
        May 5, 2023 at 4:39 pm

        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!

         

      • jen-cueva

        Member
        May 8, 2023 at 12:47 pm

        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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