The Aspergillosis Trust have been celebrating 2 years of being a charity. They have exceeded their expectations and are growing daily. They have had many other highlights and work over the past month includes:
On June 11 1963, Dr James D. Hardy led a team at the University of Mississippi Medical Center, including Dr Fikri Alican from Turkey, in successfully performing the world’s first lung transplant. To celebrate its 60th anniversary, Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc) declared this day as ‘Lung Transplant Day’. In collaboration with Kartal Koşuyolu YEAH Lung Transplant Center, they organised an event. To commemorate the occasion, the General Directorate of Highways supported them by illuminating the Bosphorus bridges of Istanbul in purple for lung transplant awareness. The day commenced with a boat trip on the Istanbul Bosphorus, attended by prominent lung transplant surgeons, organ donation coordinators, PAHSSc representatives, volunteer doctors, the press, and fortunate lung-transplant recipients. The lead surgeon paid tribute to Dr Alican and provided a brief overview of lung transplantation. Olcay Soykan, PAHSSc’s Vice-President, emphasised the lack of lung transplants for children under 14 in Turkey and the need for action. The doctors discussed lung diseases and the importance of lung transplantation, while organ donation coordinators stressed the significance of organ donation. Wish lanterns were released, symbolising the wish for speedy organ matches. They also donated a Portable Oxygen Concentrator to a lung transplant candidate. The night concluded with uplifting songs sung by all guests, accompanied by guitarists.
A recent ALK+ UK success story led to the creation of a new DNR Decisions Guide. In April, an ALK+ UK member, Paul, reported that during a routine visit to his local hospital he had been approached by a doctor who insisted he should be on the Do Not Resuscitate (DNR) Register due to his cancer diagnosis. Despite Paul’s objections the doctor completed and filed the necessary paperwork. Unfortunately, the charity has noticed a trend of misguidance surrounding DNR decisions, especially among medical teams unfamiliar with ALK+. Paul lodged a complaint and reached out to ALK+ UK. Its Medical and Scientific Panel were able to provide valuable advice which helped Paul to successfully reverse the decision. As a result of this incident, the panel rapidly created and published a DNR Decisions guideline document. Paul’s story highlights the significance of this new paper; it serves as a valuable resource for healthcare professionals, patients, and families, providing comprehensive information on navigating DNR decisions in the context of ALK+ Lung Cancer. This success not only benefits Paul personally but also sets a precedent for compassionate and informed care for all ALK+ Lung Cancer patients.
Paul, member of ALK+ UK.
Spirometry is key to diagnosing asthma, COPD and other lung diseases. It is also important to check lung function after a COVID-19 infection. Research by the Austrian Lung Union showed that only 60% of men and 50% of women in Austria have ever had a lung function test. But more than 70% know their blood sugar and more than 90% know their blood pressure. As breathing is so vital the Union want spirometry to be included in every preventive medical check-up and to be reimbursed at GP level.
The Pulmonary Fibrosis Trust are delighted to announce the new Patron of the Charity — Chef Alain Roux. Chef Alain, a world famous and celebrated chef, takes on the patronage in memory of his father, Michel Roux OBE, founder of world famous The Waterside Inn, who died in March 2020 from idiopathic pulmonary fibrosis. Chef Alain met recently with the Trust Chair, Peter Bryce, and said: “Having witnessed my father suffer the disease, I care passionately about supporting the [Pulmonary Fibrosis] Trust’s efforts to try to help sufferers and their families and to improve treatments. It seems to be an illness that many people suffer but so many do not understand or know about it.”
PCD Support UK were thrilled to be able to assist children and families with PCD by contributing to the cost of children’s kits for PCD patients at the Leeds Teaching Hospital. They were able to purchase blowing games, single-use equipment, and a tiny information card for 80 packets thanks to the £150 supplied by PCD Support UK (see photo below). In the future, all newly diagnosed patients and children between the ages of 3 and 10 will receive these kits at their yearly review sessions in the north of England. PCD Support UK are so grateful for all who fundraise for them to allow them to support those with PCD. If you wish to donate, please use the “Donate” button at the top of this page.
The President of Sevilla Respira participated as a moderator at the 6th SEPAR forum for patients with respiratory diseases on 9 June. Previously, on 8 June, Sevilla Respira attended the training course for patient associations given by SEPAR. They found it very enriching to share knowledge with other associations and to receive training from experts.
Global Allergy & Airways Patient Platform (GAAPP) celebrated its annual Scientific Meeting and AGM in Hamburg (Germany) in the before the European Academy of Allergy and Clinical Immunology (EAACI) conference with a record number of in-person and online participants. They provided patient-friendly updates on the latest therapies and research in urticaria, eczema, food allergies, asthma & COPD. You can watch a replay on the GAAPP website.
From 9–11 June, Italian Bronchiectasis Association (AIB) participated in the “PneumoLogica” congress in Bari, Italy. PneumoLogica is a national congress dedicated to pneumology. It was an important time for the many patient organisations and clinical professionals to meet to continue supporting their members.
The Awareness for Immune Disorders Association (AAIDA) is excited to have partnered with Global Allergy and Airways Patient Platform (GAAPP) for a special educational webinar on the 2nd annual World Bronchiectasis Day.
NTM Info & Research (NTMir) are proud to announce the first World NTM Awareness Day on August 4th, 2023. For twenty years, NTMir has been committed to supporting patients with nontuberculous mycobacterial (NTM) disease, their caregivers and healthcare providers with medical education and research. NTMir recognises the continuing increase in cases and the need for information, support and resources for those affected by this disease. The inaugural World NTM Awareness Day aspires to raise awareness of the resources available to patients and increase early testing to avoid delayed diagnosis. Stay tuned for more information!
