Marfan Association Queensland | Medical and health
Marfan Association Queensland
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22.01.2022 On the 24th of March the Marfan Association of Queensland lost one of their own, Gaynor Solomon. Gaynor was part of the Queensland Association since it's conception, and held positions of Treasurer, Secretary and Vice President during her time on the Committee. Until her passing, she was an active member of the Marfan Community. All are welcome to attend, her funeral. Details are as follows: 1.30pm Monday the 1st of April Garden Chapel at the Albany Creek Memorial Park, 40...0 Albany Creek Road (in Albany Creek) If you wish to attend please wear bright colours to celebrate her life.
22.01.2022 The AGM has been moved to 15th November at the Gold Coast... will confirm details soon! The AGM has been moved to 15th November at the Gold Coast... will confirm details soon!
22.01.2022 It is normal to have worry and unease about your health during stressful events. The Australian Psychological Society has some suggestions on how to look after yourself and manage this stress, available at https://www.psychology.org.au/COVID-19-Australians
21.01.2022 If you are a patient of The Prince Charles Hospital and after case specific advice please email us [email protected] but keep in mind we are extremely busy during this period and might not be able to reply straight away - Michael
20.01.2022 During the COVID-19 pandemic our thoughts and feelings go out to all. Without wanting to bombard you with information please take care and follow advice from Queensland Health: www.health.qld.gov.au/coronavirus
18.01.2022 Hi everyone, Our next catch-up was scheduled for 25th May but with so many going to the Conference on the 18th May we have decided to have the meeting then also, It will be at 1pm (through the lunch break)...you are welcome to come for the MAQ meeting only also, if there is anyone that would like to do this please let me know for catering purposes ASAP. looking forward to seeing you!... Natalie :) See more
18.01.2022 Please save the following catch up dates for next year. Hard to believe 2020 is almost here. Saturday 22nd February Brisbane Saturday 23rd May Gold Coast... Saturday 22nd August Brisbane Saturday 24th October Gold Coast AGM Full details will be provided nearer the time. We look forward to seeing you!
17.01.2022 Greetings everyone. Hope you are all well. Our upcoming meeting, 22nd August, is being postponed. All going well we will meet up Saturday 24th October for our AGM. Details will be given nearer the time. Please let us know if there is any support we can provide inbetween.
16.01.2022 An article from our friends across the ditch!
15.01.2022 Hi everyone... Here are the details for the Marfan & Aortopathy Conference at The Prince Charles Hospital! Feel free to share
14.01.2022 Very sad to hear this news... but thank you Professor Malcolm West and his lovely wife Jenny West for everything you both have done to help and support so many lives. I'm so grateful for everything you did for myself and my family for over 20 years. Much love and blessings to you both Natalie
14.01.2022 Hi everyone! Hope you are all doing well :) The Prince Charles Hospital Foundation is supporting a Conference to raise awareness for Marfan Syndrome & associated conditions on Saturday May 18th 2019 Chermside Brisbane and would love you to save the date! Please share around, everyone is welcome! An invitation confirming final details will be out soon.... Hope you can make it! Natalie Fox Vice President
11.01.2022 The Marfan Foundation embarked on a new campaign, 2020 in 2020: Backpack Health, a push to have 2,020 people in our Marfan and Related Conditions International Patient Registry by June 1, 2020. They started at 1188 so that’s 820 more people in the next seven months. There have been many advances in Marfan and related conditions in the past several decades; however, many questions still remain. How common are migraine headaches in people who have Marfan and related conditions...? What treatments have been commonly used and what are their success rates? How common are gastrointestinal issues in Marfan syndrome? What are the true risks for lens replacement surgery in people with a connective tissue condition? What can you do to help answer questions like these and so many more? You can share your experiences in The Marfan Foundation’s Marfan and Related Conditions International Patient Registry so that researchers can learn from your medical journey. This is an extremely valuable way for researchers to study the patient population. And there’s no cost to you at all. When you join the registry and agree to provide detailed information about your diagnosis and medical issues, and participate in surveys, you can play a direct role in advancing research. We recommend having your records on hand so you can upload your medical information and complete the initial survey easily and quickly. If you have any questions about the registry, please email Josephine Grima at [email protected].
11.01.2022 If you are interested in Marfan specific advice regarding COVID-19 please consider joining The Marfan Foundation (America) Webinar, 1st April 10am Brisbane time: Your Medical Questions Answered: COVID-19 and Marfan and Related Conditions As the coronavirus pandemic continues, our community has new questions about COVID-19 and Marfan, VEDS, Loeys-Dietz, and related conditions. To address this need, we scheduled another free medical webinar for March 31, 8 pm Eastern. Two membe...rs of our Professional Advisory Board from Johns Hopkins, Dr. Enid Neptune (pulmonologist) and Dr. Hal Dietz (geneticist/ cardiologist), will answer your questions. Register and submit your questions here. https://info.marfan.org//f18dQhb0S66-28_NrPM1vjj-SwThjVj2B
08.01.2022 Hope to see you there :-)
08.01.2022 Following our recent AGM we are pleased to announce the 2019-2020 committee: Executive Committee: President Michael Reye Baldini Vice president Natalie Fox... Treasurer Greg Fox Secretary Joelene Craig General Members: Alumni & National Association Liaison Jenny West International & Interstate Liaison Rachel Olsen We would like to take the opportunity to show appreciation to Mark Richards, Vanessa Richards, Bob Solomon and Yvette McKinnon for their wonderful contributions to the association.
02.01.2022 In the interests of safety, we have CANCELLED our next catch-up: Saturday 23rd May. Our next is due 22nd August, however we will review and update you nearer the time. Stay well!
01.01.2022 Congratulations to our very own Mark and Vanessa! He's here! We are so thrilled for you both! Lots of love to you all Emmett Mark Solomon Richards, 7th January 2019 (born at 38 + 2), 11.33am via cesarean. 3.3kg (7lb 5), 51cm of perfection & full head of wavey dark hair. Feeding well & super cute!
