Pulmonary Fibrosis Foundation

One of our favorite parts of Pulmonary Fibrosis Awareness Month in September is sharing your stories. Everyone who has been impacted by pulmonary fibrosis has a story to share. And you’re invited to use our platform to tell it 💙

This is your chance to share an important story and message to a large audience, and to tell the world how you’ve been affected and that we all need to take action to find a cure.

Here’s how it works:

🔹 Use our story form to upload your favorite pictures of you or your loved one with PF
🔹 In about 4-5 paragraphs, tell your story
🔹 Submit it to us at the PFF, and we’ll work with you to schedule it onto our social media accounts
🔹 Your story is shared on the PFF’s social media accounts to raise awareness all across the world

Get started now at www.pulmonaryfibrosis.org/MyStory
🔔 Hurry, submissions close on August 25!

Last month, the PFF attended the National Scleroderma Foundation Conference to promote our resources and programming to the scleroderma community. Did you know that scleroderma is one of the known causes of PF? We were proud to attend this event to network and meet people in the community during this important conference!

(Pictured: Leah Sorini, PFF; Terri Pilawa, One Breath Foundation; Ingrid Schwab, PFF)

PFF Ambassador Emeritus, Melissa, got a shout-out during the Olympics! 🤩

Melissa is currently waiting for a lung transplant. While in care, she tweeted a picture of herself to the Olympics and they shared it LIVE ON AIR! 🎙📺

💙 We’re all rooting for you, Melissa! 💙

Transplant Patient Featured At Olympics Is From Western New York A transplant patient from Western New York was featured during the Paris Olympics on Monday.

Our photos from the PFF Walk - Pittsburgh are now live! 😍✨

Thank you to everyone who joined us in Pittsburgh and helped us kick off the PFF Walk 2024 season! Together we've raised $111,830 and have taken steps forward in our search for a cure for pulmonary fibrosis and idiopathic pulmonary fibrosis. 💙

📸 Check out the photos at: https://www.flickr.com/photos/pfforg/albums/72177720319054297

We extend our heartfelt thanks to all of our PFF Walk - NYC Metro sponsors! 🌟 Together we are making a difference! 💙

If you want to join the PF community for another Walk, you can find dates, locations, and more at PFFWalk.org.

Host a movie night this summer and support the Pulmonary Fibrosis Foundation! Gather your friends, family, or neighbors for a fun and relaxing evening under the stars or in the comfort of your home. Enjoy a great film while raising funds for a vital cause. Every contribution counts in supporting education and research for pulmonary fibrosis. With easy planning and lots of enjoyment, it’s a win-win! Start organizing your event today and let’s make this summer unforgettable!

If you're interested in hosting your own summer fundraiser, please fill out our Team PFF interest form, and our team will contact you to provide guidance.
https://www.pulmonaryfibrosis.org/get-involved/events/fundraise-with-team-pff/team-pff-interest-form

It’s Fact Friday, and here’s a sneak peek for you 👀

Starting in September for Pulmonary Fibrosis Awareness Month, ✨ every day is Fact Friday! ✨

That’s right. Every single day in September at 11 a.m. central time, we’ll be posting a fact about pulmonary fibrosis. Raising knowledge and awareness about this disease is one of the goals of Pulmonary Fibrosis Awareness Month. Be on the lookout next month for a daily fact series! We’re certain that you’ll learn something new.

Hot off the press! 📰🔥 Chicago area pulmonologists from the Pulmonary Fibrosis Foundation’s Care Center Network penned a letter in the Chicago Tribune outlining the challenges of accessing oxygen that have led to the introduction of the SOAR Act.

Thank you to our CCN partners Loyola Medicine, UChicago Medicine, Rush University Medical Center, Northwestern Medicine for making this possible. 🫁

Read the full letter under the Supplemental Oxygen Measure title at the bottom of this page: https://bit.ly/SupplementalOxygenMeasure.

Want to help today? Ask your member of congress to sponsor the SOAR Act today at: https://www.pulmonaryfibrosis.org/get-involved/volunteer/become-an-advocate

Be A Pulmonary Fibrosis Advocate | Pulmonary Fibrosis Foundation PFF Advocates regularly contact members of Congress and and other officials to advocate for issues of importance to the pulmonary fibrosis community.

Keep it up Connor! When his father Tom was diagnosed with pulmonary fibrosis in 2021, Connor moved home to help his family. Now, he's raising funds and awareness to help the PF community. Read on to learn more about how Conner’s personal passion led him to join the PFF Walk - NYC Metro on Saturday, Aug. 3, at Liberty State Park.

📰 Read the article:

patch.com

Summertime is the best time for fundraising! This summer, you can turn your love for trivia into a powerful fundraiser for the Pulmonary Fibrosis Foundation! Hosting your own trivia night is a fantastic way to test your knowledge, enjoy great company, and support a meaningful cause all at once! Let's create lasting memories and make a meaningful impact this season!

If you’re interested in hosting your own summer fundraiser, please fill out our Team PFF interest form, and our team will contact you to help you get started.😎💚 https://www.pulmonaryfibrosis.org/get-involved/events/fundraise-with-team-pff/team-pff-interest-form

Join us this Saturday as we walk together toward a cure in the NYC Metro area! 🗽 Choose between a 1-mile or 2-mile course along a beautiful waterfront with views of Lady Liberty, Ellis Island, and the Manhattan skyline. After the Walk, enjoy family-friendly activities and light refreshments.

The PFF Walk brings together those impacted by pulmonary fibrosis to raise funds and awareness for the Pulmonary Fibrosis Foundation. Your participation helps us step closer to a cure for pulmonary fibrosis.💙

Registration is free and every dollar raised makes a difference in the lives of people with PF. Raise $100 or more and receive our official, commemorative t-shirt.🎉

Register now at PFFWalkNYC.org!

Shout out to Team PFF Ambassador Lyla Chandiramani! Lyla hosted her second annual Breathe n Run event in memory of her beloved grandmother, Kavita Chandiramani on August 3rd in Virginia Beach, VA. The Breathe n Run event aims to educate the community about the impact of pulmonary fibrosis, promote physical fitness, and raise funds for the Pulmonary Fibrosis Foundation. To date, over $12,500 has been raised for this years event. If you or your family would like to learn more or participate, please click the following link 🏃‍♀️💜 https://www.pulmonaryfibrosis.org/get-involved/events/attend-an-event/event-details/2024/08/03/default-calendar/breathe-n-run

Wildfires burning in Colorado and Southern California are spreading smoke across the Northwest this week. If you’re living with pulmonary fibrosis or interstitial lung disease, it’s especially important to have a plan in case you need to take action or evacuate your home. To learn how you can prepare in an emergency, watch this webinar featuring pulmonologist Dr. Alison DeDent, who explains everything you need to know. ⚠️ Get informed now! https://youtu.be/OTUFCpbQq_E?si=Nn6acRsBBeaYnVrS

Want more tips? ⬇️Download the guide:
https://www.pulmonaryfibrosis.org/.../other-educational...

PFF Disease Education series Emergency Preparedness and PF: What You Need to Know This webinar is entitled "Emergency Preparedness and PF: What You Need to Know" and will cover the risks associated with certain emergencies - especially for...

Help us thank CVS Health, National Gold Sponsor of the PFF Walk. Thank you for joining us as we walk together toward a cure!

Attending our upcoming PFF Walk - NYC Metro? Make sure you visit the CVS Health booth to learn more about the work they do with the PF community. Register and learn more at PFFWalkNYC.org.

🔔 Submit your Lung Pose by August 15! Last year's popular Lung Pose is back for Pulmonary Fibrosis Awareness Month in September. We want to share your poses and stories! Here's how it works:

🔹 Fill the form with your story and your photo
🔹 We'll drop your photo into the official PFAM 2024 template and send it back to you
🔹 We'll share your story and photo on our social media, and you can do the same on your social media to raise awareness.

📅 Hurry, the submissions will close on August 15! Get started at pulmonaryfibrosis.org/lungpose

Pictured: Vanessa from Florida and her PFAM Lung Pose from last year!

Get ready to make a difference with the PFF! Are you interested in fundraising for a good cause this summer? We have some exciting summer fundraiser ideas for you. Why not organize your own Pickleball Tournament to support the Pulmonary Fibrosis Foundation? It’s a fantastic opportunity to combine your love of pickleball with a meaningful cause! Gather your friends, family, and neighbors, and let's make this summer one to remember while supporting what matters most.

If you want to host your own summer fundraiser, please fill out our Team PFF interest form. Our team will be in touch to assist you every step of the way. https://www.pulmonaryfibrosis.org/get-involved/events/fundraise-with-team-pff/team-pff-interest-form

✅ 🔬 Research can ONLY move forward with patient volunteers. Courageous patient participation has helped scientists answer some of the most pressing questions about pulmonary fibrosis — and they want to continue answering more! 💭

This month, we’re highlighting three trials that are actively recruiting for the following conditions:

🔹 Myositis associated interstitial lung disease
🔹 Idiopathic pulmonary fibrosis

Join a clinical trial to help researchers find new and improved treatments for pulmonary fibrosis.

Learn about current trial highlights and how you can find a trial!

📌 Get started at https://conta.cc/3WAfOx4

☀️ It's summertime, and pools and hot tubs are in full swing. But did you know that long term exposure to contaminated water droplets can lead to hypersensitivity pneumonitis, or HP? HP is one of the more than 200 types of pulmonary fibrosis. Learn all about "hot tub lung" at bit.ly/pff-factsheets

Host a Facebook fundraiser for the PFF and use our PFF Bingo card to win t-shirts, pens, and wristbands! 👕🛍️🥤 Stay tuned, as we’ll be posting pics of the merch soon. In the meantime, get started on your Facebook fundraiser! It’s a great way to share your story, raise awareness, and support the pulmonary fibrosis community. Download the bingo cards and get started at https://www.pulmonaryfibrosis.org/get-involved/events/fundraise-with-team-pff/fundraising-on-facebook

Our first-ever PFF Walk began in 2017, right here in Chicago where we’re headquartered. 🏙️ We created this Walk because we know that walking and uniting together as one is a powerful experience. The PFF Walk - Chicago has continued to welcome hundreds of participants to Diversey Harbor each year from states all over the midwest and Great Lakes area. 🌟

Will we see you in Chicago or at another of our six sites? Register to Walk today at PFFWalkChicago.org.💙

Do you have memories of a PFF Walk? Use the hashtag and tag us for your chance to be featured on our page!

💙 Every breath, every story.

We are proud to unveil this year’s Pulmonary Fibrosis Awareness Month (PFAM) theme!

📣 Beginning September 1, the PFF will be posting content every day on social media — and we want a lot of the content to come from YOU! Submissions for our Portraits of PF series and the new Lung Pose are now open. Don’t delay — submissions will close on August 15!

Here’s a breakdown of the two activities we’re collecting submissions for:

🔹 Portraits of PF: Tell us your story. Submit a photo of yourself or your loved one and tell the world about your journey with PF and how it has impacted you. Storytelling is one of the most powerful ways to raise awareness.

🔹 Lung Pose: Strike a pose! Take a selfie following our instructions and we’ll drop your photo into our official PFAM template. Then, share the photo on your social media accounts with your friends and family to tell the world you support the PF community.

There’s so much more to PFAM than these two activities. Visit pulmonaryfibrosis.org/PFAM to take a look at what we have planned for you. We'll be posting a lot about PFAM, so keep following!

Join us this September as we stand together to raise awareness of pulmonary fibrosis.

Congratulations to Peggy Conlon for successfully hosting a Mother's Day event at her local J. Crew! During the three-hour event, a percentage of the sales were donated. The event resulted in a total donation of $708 for the Pulmonary Fibrosis Foundation. On behalf of everyone at the PFF, we would like to express our gratitude for your support in raising funds and awareness about pulmonary fibrosis! What a fun and creative fundraiser!

This event was a part of our Team PFF program. If you have any ideas for a fundraiser of your own, you can make it happen by signing up for Team PFF! Turn your passion or hobbies into action at pulmonaryfibrosis.org/teampff

Thank you, Congressman Bill Posey, for cosponsoring the SOAR Act (H.R. 7829) and supporting individuals who require supplemental oxygen at home and in their communities!

🔔 Don't forget! In just two days, we'll be hosting this webinar all about lung transplants. Tune in to learn something new!

❌ Can't make it? No problem. Register anyway, and you'll get notified when you can watch it on YouTube. https://us02web.zoom.us/webinar/register/WN_7F7yEnoCSCmkNPSYF2GgKA #/registration

Thank you to our PFF Walk - Pittsburgh sponsors! 🌟 Your support has been instrumental in making our event a success and bringing us closer to our goal of finding a cure for pulmonary fibrosis.

You can still join the PF community this summer and fall to walk together toward a cure, you can find dates, locations, and more at PFFWalk.org. 💙

All of the community sessions from PFF Summit 2023 are now on YouTube! Over the past few months, we’ve been rolling out sessions that are tailored to patients, caregivers, lung transplant recipients, and those who have lost a loved one. Every single session is now available in full right on YouTube. Check out our official playlist, and below, you’ll find images of just some of the great topics last year’s conference covered.
https://www.youtube.com/playlist?list=PLpH8pAi91UL1PNpE54LIjLz-BydWegV-L

Join us this weekend as we walk together toward a cure! 🌟 Held at North Shore Riverfront Park, the PFF Walk - Pittsburgh offers two course options – 1-mile or 2-mile – along a gorgeous waterfront pathway with spectacular views of the downtown skyline. After the Walk, we invite you to stay for a celebration with family-friendly activities and light refreshments.

The PFF Walk unites everyone impacted by pulmonary fibrosis and provides a special opportunity to raise funds and awareness for the Pulmonary Fibrosis Foundation. Everyone who participates in the PFF Walk is making a valuable contribution to our collective effort toward a cure for pulmonary fibrosis. 💙

Registration is free and every dollar raised makes a difference in the lives of people with PF. Raise $100 or more and receive our official, commemorative t-shirt.🎉

Register now at PFFWalkPittsburgh.org!

⬇️ Download the guide:
https://www.pulmonaryfibrosis.org/patients-caregivers/education-resources/other-educational-resources

Why read this guide?

According to NPR, this year’s Atlantic hurricane season is expected to be extremely active, putting tens of millions of Americans in the eastern half of the country at risk from flooding and damaging winds, forecasters at the National Hurricane Center warn. The increased activity is partially caused by abnormally warm ocean temperatures driven by climate change.

Forecasters expect 17 to 25 storms to form in the Atlantic between June 1 and the end of November. At least 8 of those are forecast to be full-blown hurricanes, as opposed to weaker tropical storms. And 4 to 7 are expected to be major hurricanes, with winds powerful enough to uproot trees, destroy mobile homes and damage other buildings.

It’s the largest number of storms ever forecast for the Atlantic, and is well above the average of 14 storms that usually occur in a given hurricane season.

⚠️ If you live in the path of a hurricane, you need a plan. Download our free guide today.

🔔 📅 Tomorrow! Please join us for our second watch party and live question and answer session. On Wednesday, July 17th, a recording of the PFF Summit 2023 session "Breathe Easy: Using Supplemental Oxygen" will be played, followed by a live question and answer session with two of the presenters: Annlise Calypso, CRNP and Susan Jacobs MS, RN, FAAN.

Come learn all about why supplemental oxygen is prescribed, types of supplemental oxygen equipment, and tips for optimal supplemental oxygen usage. Traveling with supplemental oxygen will also be discussed. Please bring your questions for our experts!

Registration Link: https://us02web.zoom.us/webinar/register/WN_K5QnI_ecRqKZ0yP4K25a_Q