Two weeks ago I received a phone call from Professor David Badesch in the USA. Fondly remembered by the Lowe family simply as “David” he is one of the world’s foremost experts on Pulmonary Hypertension. Prof Badesch is a Professor of Medicine in the Division of Pulmonary Sciences, Critical Care Medicine and Cardiology, and Clinical Director of the Pulmonary Hypertension Centre, University of Colorado, Denver, Colorado.

This man, Professor David Badesch, was quite literally a lifeline for us during Jenna’s illness. I first reached out to him early in 2013 as Jenna was rapidly deteriorating. We needed help and he unquestioningly gave of his time, expertise and knowledge for free. He travelled to SA many times, giving valuable input on Jenna’s case as well as that of other patients diagnosed as a result of Jenna that we asked him to see. He gave seminars, spoke to local doctors, helped me advocate for Jenna’s international medication… he took up the challenge to become a part of changing the landscape of Pulmonary Hypertension (PH) in SA.

The reason for his recent phone call? Prof Badesch is speaking at the International Pulmonary Hypertension Conference in Dallas this month, and he was looking for an update on what is happening in SA to share with the global PH community.  I was delighted at the opportunity and asked Dr Greg Symons from the Groote Schuur Hospital Pulmonary Hypertension Clinic to send him an interim report. Here is a short extract from his report so that you can share the pride we feel at the selfless and courageous work that Jenna started at the tender age of 17.

“The Groote Schuur Hospital Pulmonary Hypertension Clinic (GSH PHC) was established in 2015 following the tragic death of Jenna Lowe, a young woman who suffered from the disease. Due to her concentrated effort to raise awareness of this rare disease as well as lung transplantation, Jenna brought the acute need for a tertiary specialist clinic for PH into focus.

 

With support from the Divisions of Pulmonology, Cardiology and the Divisions of Pharmacology, the GSH PHC was established. Nursing support was ably provided through very generous donations from The Jenna Lowe Trust financially supporting the role of a clinical and education sister (Sr. Lizzie Brierley). The goal of the PHC has been to provide a home for this small group of patients with a rare disease, raise awareness of an orphan disease as well as garner greater advocacy for the necessary expensive investigations and management of the condition.”

Dr Greg Symons, MB Chb, FCP, Cert. Pulm

To date we have 36 patients registered with the new PH clinic and the funds that Dr Symons talks about have been raised solely from the combination of sales from The Jenna Lowe Trust RELATE bracelets and winnings from Jenna’s Lead SA Youth Hero of the Year Award that she won posthumously. How fitting and apt that her courage, compassion and dedication to making a difference funded her vision to start a centre for treatment in SA. Thank you Lead SA and thank you DisChem Foundation for making this possible.

Thank you too to the kind and caring people at BMW Auric Auto in Claremont who supported The Jenna Lowe Trust with our first large order of bracelets. At the recent launch of their MINI Clubman they handed out Jenna’s bracelets and Adriano Folsch, the Dealer Principal, spoke about Jenna and the JLT (Jenna Lowe Trust). Here are a few pics from their launch (taken by Gavin Withers Photography).

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