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    • #21081

      Month’s that are dedicated to raising awareness for certain diseases was always something I felt a little uncertain about. Mainly because every disease deserves to be recognized, but undoubtedly there are some months of awareness that are more well-known than others. A primary example would be the pink ribbon for October, which stands for breast cancer awareness. While I agree entirely with the need to raise funds and research for breast cancer, it is a bit disheartening that not a comparable amount of people know what the blue and red awareness ribbon stands for: pulmonary fibrosis awareness.

      This disease has turned my world upside down in the last three years, and a recent statistic stated that more people die from IPF (50,000 / year) in the U.S. than breast cancer (41, 000/year). Something needs to be done about this deadly, relentless and unforgiving lung disease!

      September is PF awareness month so I invite you to get creative about different ways you can help raise the profile about this disease. Last year, the Pulmonary Fibrosis Foundation shared a tangible list of ways to do that, which you can read about HERE.

      While funding research is critical and incredibly important, so is helping others’ realize the early signs of this disease. This is especially true because they can be mistaken for so many other, more-common aliments like Asthma, bronchitis or a stubborn respiratory  virus. If you help educate someone about IPF via the early signs, symptoms or what to watch for; you have potentially given them the tools to seek earlier care and treatment in the unfortunate event they (or their loved ones) are ever diagnosed with this disease. That matters!

      Here are a couple of other blogs/columns that you can share on social media to help raise the profile of PF in your community this month. Help us spread the word!

      PF Awareness Month Feels Less Important than Others 

      PFF Promoting Awareness Month with Range of Activities

      September Marks Global PF Awareness Month

      #PFAwarenessMonth: How We Can Work Together to Raise Awareness for PF

       

    • #21138
      Taleena Koch
      Participant

      Raising awareness is SO important and for years, we have been trying to get an alignment on colors.  Years ago, the PFF had blue and red and then they changed to the blue and green they have now.  I tried to align the Breathe Support Network with the blue and green as well, and so have the pharma’s.  However, much of the rest of the PF world is blue and red.  We need to band together as a worldwide society and pick a color scheme.  And with the PFF being the leading PF foundation, we really need to get them on board with whatever is decided upon.  I believe the BLF is red and blue.  PF Warriors is red and blue.  Many others are red and blue.  I am willing to make the switch if we can make it happen worldwide.  Now… how do we get the PFF on board and make this happen???

      As for actual awareness… everyone use your social media.  Both the PFF and Breathe Support Network are sharing things every single day in September and we both share things all year long.  The PFF is sharing their 30 Facts for 30 Days campaign and Breathe Support Network is sharing 30 Ways to #LIVEwithPF.  The PFF has their 30 Facts on their main page in Facebook and Breathe Support Network has their 30 Ways on their main page in Facebook as well as on their website (www.BreatheSupport.com).  Both are great resources for finding information about PF to share.

      Wear your PF shirts, wristbands, etc. if you have them.  The PFF has a shop where you can purchase these items.  The Pulmonary Fibrosis Association (in Texas) does as well.  Their website is http://www.pfassociation.org.  Breathe Support Network also has #LIVEwithPF wristbands for sale and is working on shirts and window clings for the near future.  Other entities out there may also have PF logo wear items for purchase.  I always try to purchase mine from places where I know the profits are going to help with PF research or helping patients and families in some way.  For instance, the PF Association in Texas funds oxygen for patients who don’t have insurance coverage for it so when you purchase shirts or wristbands from them, you are helping to provide oxygen to patients who need it but don’t have the financial means.

      Be creative.  Plan a local fundraiser of your own.  If you need materials to distribute, you can get those from the PFF and the Breathe Support Network.  You can also do fundraisers on Facebook now.  Those are easy and you’d be surprised how many of your Facebook friends are willing to give $5 to help.

      Speak out about PF.  Many aren’t comfortable talking about their disease or their loved one’s disease.  Get comfortable.  The ONLY way we are going to find a cure for this wretched killer is to talk about it.  If we try to hide it, we get no where.  The Breathe Support Network has a fact sheet you can download and print out (3 on a page) and you can hand them out to people.  Be loud and proud!  #LIVEwithPF!  Help in finding a #CureForPF!

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