World PH Day: Letter from the Director

April 19,2022

We are grateful to be in the season of renewal after a long winter. With spring comes one of the most important advocacy events of the year for our community–World PH Day. In celebration, we are again holding our fan-favorite Virtual Race Day. On this day we encourage those who are part of our Let Me Be Your Lungs program and anyone in the community to track their movement on this day. Stay tuned for details on our website and social media channels.

This week, we are looking forward to the 9th Annual PHenomenal Hope 5K in Pittsburgh. This annual event is the largest contributor to our annual research award, which works to advance treatments and ultimately cure PH. Online registration is now closed, but you can still register in person at the event. Make a donation online to support this cornerstone event here!

As a rare disease family, it’s important to surround ourselves with a supportive, informed, and resourceful team as we navigate a PH diagnosis. Last fall, Team PH created a new virtual support group program to provide a safe space to those living with PH. This group meets via Zoom every other month to discuss relevant and educational topics. Go to our support group resource page to find and register for upcoming Team PH support group meetings, as well as watch past meetings. Our next meeting is on Saturday, May 14 at 1pm CT, and will be meet and greet style with open-ended discussion. You can find the support group resource page and register for our next meeting here. For any questions, you may reach out to our support group leader Lenise Whitley at lenise@teamphenomenalhope.org.

We are elated to be returning in person to PHA’s International PH Conference in Atlanta, June 10-12th. We look forward to seeing your faces, and share with you some engaging activities at our booth in the exhibit hall. If you are looking for some financial support in order to attend the conference, apply for a scholarship from Team PH today! We are providing both adult and pediatric scholarships–learn more and apply here.

In our final two Living Well Now and Beyond campaign informational videos, we have invited those living with PH to share how they thrive in life after diagnosis. Additionally, medical experts will discuss the importance of being mindful while choosing who you surround yourself with while caring for your disease. We call this your “crew van,” much like some of our ultra-endurance athletes surround themselves with their crew van team.

We rely on donor support to fuel our programs in order to continue serving the PH community. Please make your donation today at www.teamph.org/donate or by mail at, Team PHenomenal Hope, P.O. Box 1115, Beloit, WI 53512.

With gratitude,

Linda Appleby

Executive Director

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