You’re in Our Crew Van: Letter from the Director

March 23,2022

Last month we amplified the voices of pulmonary hypertension on Rare Disease Day. Our founder and president Dr. Patricia George shared a resourceful blog, What Does it Mean to Celebrate Rare Disease Day? It’s worth a read if you missed it, check it out here

In the rare disease community, it’s important to surround ourselves with a supportive, informed, and helpful team. In our next video of the Living Well Now and Beyond campaign, PH specialists will discuss who you should surround yourself with as you manage your PH. We call it your “crew van,” much like some of our ultra-endurance athletes surround themselves with their race crew. 

In conducting organizational short term and long-term planning, we reached out to our broad “crew van” members. More than 100 patients, caregivers, donors, current and former industry partners, board members, athletes, and community nonprofit leaders contributed to and inspired us during our planning discussions.As we reach out to the community for help and engagement, we hope you will consider how you can contribute your time, talents, or resources to help Team PH serve those affected by PH. 

Our next virtual support group meeting is next week, Monday, March 28, 1 to 3 pm CT. In this meeting, Marcie Hoffmann of CVS Specialty will discuss the complex subject of navigating insurance and copays. We invite those living with PH and caregivers to attend. Register now here.

Our 9th annual PHenomenal Hope 5K is just about one month away! Organizer Kayla Frattini is excited for the return to full in-person this year. The 5K currently is the largest funding source for the PHenomenal Impact Fund for Global PH Research. This annually helps to fund a research award for new discovery in the field of PH. You can participate or donate now here.

Our Let Me Be Your Lungs endurance program is on fire with more than 45 participants signed up and nearly $13,000 raised to support our mission. This year in celebration of Team PH’s 10 year anniversary, our hope is to recruit a team that is bigger than ever. The funds raised support our Unmet Needs Patient Impact Fund and our other patient-centric programs. I personally love kayaking the waterways of Wisconsin, and will kayak 100 miles during the course of this summer to raise awareness and funds for Team PH. Others have signed up to walk, run, bike, paddle board, or hike. You can join the team to do any activity you are comfortable with. Learn more, donate, or join our team today at

We rely on donor support to fuel our programs to serve the PH community. Please make your donation today at or by mail at Team PHenomenal Hope, P.O. Box 1115, Beloit, WI 53512.

Looking forward to serving our PH Community in 2022 and beyond!

With gratitude,

Linda Appleby

Executive Director

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