HANKA in Charlestown, New South Wales | Community organisation

HANKA

Locality: Charlestown, New South Wales

Address: c/- Wansey Dialysis Centre, 1a Dudley Road 2290 Charlestown, NSW, Australia

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• Medical and health
• Non-profit organisation
• Community organisation

24.01.2022 https://www.nbcnews.com//drone-just-flew-kidney-transplant

23.01.2022 Good info and links for PKD, but lots that’s useful for kidney problems generally, and some that’s helpful with any chronic condition. https://aussieswithpkd.info/mental-health-and-pkd

22.01.2022 Edit: PLEASE NOTE the Renal Carer Group has now had to be postponed due to HNELHD minimising group gatherings. Carla says she will postpone it for two months and review again in early May to see if we can initiate the group. ************************************** Carla Silva, our Renal Outreach Social Worker, is starting up a Carer Support Group. This was one of the most strongly supported ideas to come out of the Patients and Carers Forum. See the flyer in the image, but bas...ically the plan for the carer group is to meet once a month, 3rd Friday of the month at Wansey Centre Resource Room at 10.30am for about 1 hours with an half hour education/information session and one hour of peer support, plus tea/coffee chat time (often the best bit for really connecting with people who have the same experiences as you). In the first meeting Carla will be engaging with carers to develop an agenda of speakers and topics of interest for the group. First meeting March 20. Please RSVP to Carla: 02 4904 8800 or email [email protected]. See more

20.01.2022 If you plan to attend the Christmas BBQ today (Thursday Dec 5) please be advised the location has been moved from Speers Point Park due to smoke haze and heat. The new location will be the Wansey Centre at Charlestown (1a Dudley Rd), so people can gather in the conference room. Time and other details are the same.

18.01.2022 This could happen in the lifetime of some HANKA members. Amazing stuff.

15.01.2022 Here’s a Merry Christmas present!! Last year the Newcastle Pinball Association (NPA) donated $2,500 to HANKA, raised at their annual Pinfest. This year they contacted us again, after another successful Pinfest, and this time they donated $4,000! In the photos are Kim Oswald and Graham McGuinness (Graham’s the one handing over the cheque). Graham was aware of HANKA because he’s had a kidney transplant for 26 years. And he seems fit as the proverbial fiddle. NPA choose to donate to local charities where they know the money won’t be swallowed up in general funds that get spent on admin, where it will mean something directly to their community. And HANKA is the right fit - almost no admin costs and all our funds help patients in the Hunter and Northern NSW area. Merry Christmas everyone!!

14.01.2022 I’ve been using ‘All Day Socks’ for about 15 years. They don’t have elastic at the top, so they don’t dig in when I am retaining fluid. But they are well designed so that they still stay up. If you have fluid retention or fragile skin around your shins, I recommend them. https://alldaysocks.com

13.01.2022 I’m attending the Patient & Carer Forum today at Club Charlestown. A lot of good information. One issue raised was travel insurance for pre-existing medical conditions, which can be pretty complex for kidney patients. I’ve been on dialysis for 26+ years, two knees broken when a car hit me so I need a walking frame to get around, and have intermittent adrenal crises, but last year I was able to arrange travel insurance to go the the UK. The company was AllClear. Obviously it’s going to be more expensive than for someone without pre-existing medical conditions. https://www.allcleartravel.com.au

13.01.2022 If you’re looking for a Christmas present that is entertaining, inspirational, thoughtful, encouraging and amusing, this would be ideal. Chloe Bayliss is now an actor, dancer, and dance teacher who is becoming a fixture on red carpets around Australia. But she’s a HANKA patron because when she was just finishing school she became ill with a mystery disease that caused kidney damage requiring dialysis, and then also dependence on plasmapheresis. I’m very happy to tell you she recovered and went on to glittering heights, but this book tells the story of her life leading up to that illness, the joy she finds in dance, and the perspective she has found through some pretty extreme experiences. https://www.booktopia.com.au/en-point//9781925700756.html

08.01.2022 If you donate to Kidney Health Australia today - Dec 3 - then your donation will be matched by their corporate and other major sponsors. Double your donation today! https://kidney-health-australia.giveeasy.org/eli-christmas-

08.01.2022 Very nice read, I know a lot of people think that their life will diminish if they donate. Sure would be nice if there was more living donors! Or better yet a... CURE!! #WENEEDMOREDONORS #FINDACURE http://stmichaelshospital.com/media/detail.php

07.01.2022 Beyond Blue has a forum specifically for coronavirus concerns - anxiety, loneliness, frustration, and depression, for instance. Just reading the posts can be helpful. You can post and reply if you join the community.

07.01.2022 Dear Friends of The Kidney Project: As 2019 draws to a close, we want to thank you for your support this year and update you on the status of clinical trials f...or the bioartificial kidney. We had originally hoped to begin first-in-human studies last year, but completing the regulatory requirements for trial initiation has proven to be a longer process than expected. Since our device is made from materials that are new in medical implants, the preclinical evaluation they must undergo is thorough and time-consuming, even for a device with FDA Breakthrough designation like ours. Since summer, we have been in contact with the FDA to determine the specific safety requirements for beginning first-in-human studies. We now have clarity on the study design and documentation expectations, and believe we will be well-positioned for favorable review. However, we are currently waiting for FDA input on requirements for biocompatibility testing, which is necessary to ensure our materials are safe for human blood contact. Fortunately our partners at FDA understand just how impactful our technology is, and are as committed as we are to bringing a safe and effective product to patients. But getting a product to patients is only possible if we are sufficiently funded. The Kidney Project relies on the generosity of donors to complete this ambitious undertaking, and the key factor in the pace of our progress is our funding levels. The more funding we have, the faster we can proceed. Conversely, when we don't receive enough funding, we have to slow down the timeline to conserve our funds. To date, we have raised more than $15 Million from grants and donations, and we will need more to complete all the preclinical development and the clinical trial to show efficacy of the bioartificial kidney in patients. The progress we have made is amplified by the resources available in the university setting, but unfortunately, we don't have the luxury of being backed by deep-pocketed business investors who can keep fueling the project when funds run low. The first clinical trial will test a small-scale version of the hemofilter in an external dialysis circuit to ensure the device material is suitable for human use. This trial had been planned for 2018, but due to the delays we experienced we now expect to start next year, in 2020. We will then look at the safety and performance of the implanted clinical-scale hemofilter, followed by evaluation of the integrated device (hemofilter + bioreactor) to show efficacy of the clinical-scale bioartificial kidney. We hope to arrive at this later stage of clinical trials in 5 years or less, assuming sufficient funding and no unanticipated scientific, technical, or regulatory setbacks. The initial trials will take place at UCSF and Vanderbilt. As these studies progress, we will identify clinical trial partners nationally and across the world. During the trials, we will be working with manufacturers to discuss and manage the details of production. When trials are complete and FDA approval is secured, the device will be immediately available for patients. Thank you for your continued support, patience, and enthusiasm for The Kidney Project. We are more committed than ever to making the bioartificial kidney a clinical reality as soon as possible. We can't do it without you! William Fissell, MD Vanderbilt University Medical Center Shuvo Roy, PhD UC San Francisco

05.01.2022 To think that a drug like this could have someone not go through the things I’ve been through in the past is huge. UQ student Alise Minogue is hopeful that a... repurposed diabetes drug called metformin could help prevent kidney failure. UQ researchers will commence clinical trials in early 2021 bit.ly/3gCeD8Q See more

04.01.2022 Back to being very careful. If you’re a dialysis patient, you’re high risk. If you dialyse in a Centre instead of at home, then you could carry the bug to all those other high risk patients who also dialyse at the centre. If you’re a transplant recipient you’re high risk. If you’re a carer then you could carry the bug to the person you care for. If you’re pre-dialysis or pre-transplant you’re higher risk than average, plus getting this bug will jeopardise your dialysis or transplant treatment.

01.01.2022 Accepting a donor kidney with a small risk of carrying HIV or hepatitis B or C might be worth thinking about.