We Are A Nonprofit Charity
Team PHenomenal Hope South Africa, in partnership with the Pulmonary Hypertension Association of South Africa is an official registered charity non-profit organisation (NPO Number 086-071).
Our main aim is to create awareness of the rare medical condition, Pulmonary Hypertension, in order to reduce the time to accurate identification of patients that are suffering the symptoms, but are currently undiagnosed or misdiagnosed. We also strive to highlight the limited options for PH patients in South Africa, as there are currently only two of the fourteen treatment alternatives readily accessible.
We are a team of volunteer athletes who race in Team Phenomenal Hope colours and fundraise in aid of Pulmonary Hypertension. We endeavour to build a community of support and to provide hope for PH patients across South Africa through the #LetMeBeYourLungs patient partnership initiative.
Why We Do This
In a fortuitous turn of events, Shanna Hiemstra ended up accompanying her mother Sandra Small, a PH patient and committee member of the Pulmonary Hypertension Association of South Africa to the biennial PHA conference in 2016, and whilst attending the meeting had an inspirational encounter with Team PHenomenal Hope.
Faced with many challenges of an under-resourced and over-stretched healthcare system, with little scope for focus on rare diseases, she realised that the incredible work that Team PHenomenal Hope was doing, would be the perfect way for carers and supporters of our PH community to create awareness for their plight and the constant difficulties that they face in trying to access life-saving treatment, which is sadly not readily available in our country.
That year, and in the two years that followed, with the incredible support of PHA.SA, a cycling team raced on behalf of the PH community in one of the premiere annual cycle challenges in the country, to raise awareness. This team forged the path for what would ultimately become Team PHenomenal Hope South Africa, and with the much appreciated support of the original US TPH, we proudly launched the official Team PHenomenal Hope South Africa on Rare Diseases Day, 28th February 2019.
Currently there is no known cure for Pulmonary Hypertension, and only two of the fourteen PH specific treatments are available to PH patients in South Africa. The team is steadily growing, and the commitment of these caring athletes, who all have their own reasons for joining the PHight, will one day ensure that more PH patients have access to the live-saving treatment that they all deserve.
Team PHenomenal Hope actively seeks ways to improve the quality of life for those with Pulmonary Hypertension by building community, providing patients with a voice and raising money to drive various awareness and patient support initiatives. We race to raise awareness and inspire those who cannot race because of their deadly condition.
Help The Cause
Want to help with a corporate sponsorship? Please email us for more details on how we can partner together for the benefit of Pulmonary Hypertension patients.
Join The Team
One of the ways Team PHenomenal Hope seeks to build community with those suffering from Pulmonary Hypertension is connect our athletes directly with patients. We call this program Let Me Be Your Lungs, or #LetMeBeYourLungs. We match our athletes with volunteer patient participants. Athletes race for their match. Patients rally to support their athlete by providing encouragement or helping them with fundraising. Together, they are a duo working to raise awareness of this critical illness and the need for continuously improved treatments and a cure.