We Accept the Challenge

January 25,2018

January 2018 Letter from the Director

Earlier this week, I was told about one of our PH friends, a dear child of 4 years who is so weak in her battle against pulmonary hypertension that her pre-K teacher has to sometimes carry her between class activities. And of another PH friend who is battling her loss of assistance for copays, which are mounting to the thousands of dollars monthly.

2018 has opened with a host of ongoing challenges for those living with PH. We have been following along with the rest of you about the news from Caring Voice Coalition. We’ve recently lost friends from the PH community. And we know some have had to think about leaving their homes if they want treatment, because their PH medications are not legally available in their country.

We know these challenges are difficult – be they to our physical health or to our pocketbooks or our sense of community. They may even be unsolvable.

We at Team PHenomenal Hope do not want to offer band aid fixes to these difficult challenges. We want deeper solutions, and if we can’t find them, we at least hope we can lend an ear to listen or a shoulder to lean on.

We are hopeful that we can fund research into a cure, but we know that is a long term goal. We want to improve the quality of life for those living with PH, today. We aim to help in the midst of a child experiencing low pressures or an adult facing difficult times, today. But how? Sometimes, as individuals, we just listen, because there is no real solution. But as an organization, we will attack this through our formal programs and outreach.

Through 2018, we will continue to fundraise for research. Additionally, we will be providing much needed short term financial help from our Unmet Needs Impact Fund; we will be seeding support to global teams to address issues of PH around the world, and borrowing their innovative ideas to implement here in the US; we will be working with parents on issues of pediatric PH; we will continue to share your stories of life with PH; we will be working on a special project for patients in Puerto Rico; and of course, we will continue to build a nationwide athlete team of dedicated individuals who will will race in the name of our #LetMeBeYourLungs partners who live with PH.

These are the small ways we can contribute. We accept the challenge of not knowing the answers to big, and sometimes painful questions about PH. We accept the challenge of not being able to fix every situation, and feeling completely helpless. We accept the challenge of dealing with the difficulties of PH, and we do so gladly on behalf of all those who live with PH, and those who have died from it.

Help us meet the challenges of PH. Share our newsletter, spread the word about Team PHenomenal Hope. Let your friends know we are recruiting athletes and patients and fundraising event coordinators.

Together, as patients, caregivers, friends, and PH advocacy organizations, we can make the impact needed to beat the challenges of PH.

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