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This topic contains 3 replies, has 3 voices, and was last updated by  Colleen Steele 3 months ago.

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  • #17170
     Jen Cueva 
    Participant

    I realize that we all live in different areas . Often, some of you are not near a big city that offers PH support group meetings and activities.

    I am fortunate to live near the Houston area and we have several community events , such as The Woodlands CrawPHish Festival, and a Golf Event each year. I’ve been to the. CrawPHish Festival many times and it was a great time! I’ve also helped with the one and only PHkids4aCure several years ago. I was a huge part in this event , although I was exhausted after , this was a huge event and the PHkuds are always my Superheroes! It was so much fun! It’s awesome to see some of these kids that are teens and young adults!

    PHA offers many events all over the world. If you don’t live in an area that has anything, you can always create your own fundraising event and PHA is a huge help. They helped myself and Teresa( Mother of a PH kid) with the PHkids event and we couldn’t have done it without them!

    What have you done in your community to raise awareness for PH?

  • #17181
     Colleen Steele 
    Keymaster

    Jen, I love the clever ways our community fits PH into words, such as CrawPHish! You have certainly kept PH busy and have found it rewarding. That’s great to hear and I’m so glad you shared your experience with us! We have done things on a smaller scale, especially when my son was in grade school. An example would be hosting coffee hour at our church with a table set up sharing information about PH. I was even allowed to share my son’s story with our parish during Mass one weekend. We only reached a small dot on the map but I assure you, our parishioners know what PH is now. As far as a community event, we have attended a PH walk in CA and that was such a positive experience. We want to do that again sometime in the near future!

  • #17207
     Kimberly 
    Participant

    There are no support groups in my area. I am singular and alone in this adventure. I try to raise awareness around my friends and family on Facebook by posting about PH.

  • #17219
     Colleen Steele 
    Keymaster

    Hi Kimberly, I am sorry to hear the lack of support groups in your area. Please don’t feel alone! I hope you are finding our PH forums to be a place where you can go to for support and to share the things that you are going through. We are here to help as best that we can! Reach out any time, especially when it sounds like someone is going through similar things and feelings as you.

    When my son was diagnosed he was only 8 years old. We attended a support group but everyone there was adults and the discussions too mature for him, so I know how you feel. I asked his doctors if there were families of young PH patients that would be willing to communicate or even meet with us, and we made several PHriends this way. Ask your doctors if there is another patient they can think of that would be a good support PHriend for you. They will have to ask permission from that person first but in my experience, people tend to want to meet other people going through what they are.

    Social media from the get-go has been an excellent way for my family to spread PH Awareness. If that is what you have been doing than you are making a big difference! People do read and then frequently share so keep up the good work!

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