Letter from the Director: A Rare and Special Community

February 28,2019

February 28th is Rare Disease Day. This year, the theme of Rare Disease Day is bridging health and social care. It’s a day when we come together as a community to raise awareness, advocate, and support those who have a rare disease such as pulmonary hypertension. At Team PHenomenal Hope, we reflect on all the patient stories we have shared. Each patient story is unique with how they have lived with PH. Recently, Team PH board member and PH patient Merle Reeseman was interviewed by our friends at Phaware Global Association about her journey with this disease, and importance of seeing a PH specialist. You can find a link to her story here.

Spring is around the corner… we hope! Spring means that the PHenomenal Hope 5K is quickly approaching. The event is scheduled for Saturday, April 27, 2019. We would love to see as many of you as possible at this great and fun event. Organizer, Kayla Frattini and her crew of volunteers are already hard at work making this an enjoyable and successful event for all. This event is a major contributor to our Team PH Global Research Fund and we are looking forward to awarding our first $50,000 research grant will be awarded this year. You can learn more about the PHenomenal Hope 5K at www.phenomenalhope5k.com. Even if you cannot attend, you can still follow the event on social media and make a donation to support Team PH.

Unique to Team PH is our Let Me Be Your Lungs Program that matches our athletes with patients. It’s a rewarding opportunity to learn more about this rare disease and to foster community between athlete and patient. We have been very fortunate to have many such relationships blossom into something very special between athlete and patient. One such story comes from of our partners at CVS Specialty who embody every aspect of the program. We want to share with you a video that features CVS employee Christine Walsh, PH patient Callie Linscott, and Team PH Board Treasurer Carl Hicks. This heart felt piece speaks to what inspires us every day at Team PH. Click here to watch.

Thank you for your contributions to our Unmet Needs Patient Impact Fund. We ask that you continue to spread the word about the fund to your networks, as the need is great to help our patients. You may make your donation online at www.teamph.org/unmetneeds or by check to Team PHenomenal Hope, P.O. Box 1115, Beloit, WI. 53512. *If you would like to learn about giving options such as stock transfers, IRA rollovers and other tax advantaged giving, please contact me directly at linda@teamphenomenalhope.org.

Finally, thank you to all the wonderful patients, athletes, volunteers, sponsors, our staff, and board for making Team PH such a caring community.

Linda Appleby
Executive Director
Team PHenomenal Hope

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