A Rare Community: Letter from the Director
February 29th is Rare Disease Day. 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 in diagnosis and PH journey.
February 29th is also the deadline for LOI submissions to the PHenomenal Impact Fund for Global PH Research for investigators to receive a $50,000 research award. More than ever, we need better treatments and a cure for PH. You can learn more about our research award and read about last year’s award winner at www.teamphgrants.org.
Additionally, Rare Disease Day is the deadline to place your order for our official Team PH racing gear. Now you can race in style and comfort while representing Team PH and the PH community. Our endurance program recruitment for the year is still open as well. All sports and level of expertise are welcome! Go to teamph.org/join to learn more about this program or contact our program manager Katie Werner at katie@teamphenomenalhope.org.
June 27th will be the 7th Annual PHenomenal Hope 5K! We would love to see as many of you as possible at this impactful event. Organizer Kayla Frattini and her crew of volunteers are already hard at work making this an enjoyable and successful event. The PH 5K is a major contributor to Team PH’s research award, so your support of this event can directly contribute to the quality of life of PH patients. Learn more, volunteer, donate, and register today at phenomenalhope5k.com. If you have a fundraising event you would like to benefit Team PH, please reach out to out to me at linda@teamphenomenalhope.org.
Reminder that we have conference scholarships available for families of pediatric PH patients. Applicants who are approved will receive $500 to put toward registration costs for the PH patient and any family member(s) planning to attend PHA’s 2020 International PH Conference in June. If you are interested in applying, head to teamph.org/phconferencescholarship to read eligibility requirements and to apply.
You may make your donation to Team PH online at www.teamph.org 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.
Linda Appleby
Executive Director
Team PHenomenal Hope
