Mid-America Transplant’s Post

Transplant patients, recipients and donors: The organ donation and transplant system is changing and no one understands the system like you do. Read UNOS Board President, Dianne LaPoint Rudrow’s latest blog to learn how to share your voice. #DonateLife #SavingLivesTogether

Best wishes for The New Year - I hope everyone had a joyous break and connected with friends and loved ones. Our vision at Lung Foundation Australia (LFA) is to champion programs and research so that Australians with lung disease and lung cancer can live their best life. I know that annual reports are not high on everyone's agenda to read but this is a good one :) It captures the story of LFA and our purpose. Working for purpose is what gets me out of bed every morning. Working directly with consumers through our advisory and engagement opportunities keeps us grounded and relevant. The consumer voice needs to remain central to what drives our purpose and I feel very privileged to work with consumers who give so generously of their time to make a difference. Frustratingly, the challenges and barriers described by consumers has remained consistent over my 30 years of doing this work - not feeling heard, feeling isolated, struggling to navigate the health system, poorly connected and not given the time or resources to be effective partners in their healthcare. We are working to change that and I know that many of you are also working hard to create that change. For me, I am hoping that 2024 will be less about admiring the problem and more about working on solutions that matter to people and that can create the shift that we are all looking for. It is complex because it requires change at a system, clinical and consumer level; celebrating success is important because it reminds of us of how far we have come and what the recipe for success looks like and it keeps us motivated when it all feels daunting. I hope you re-engage with your purpose in 2024 and if you want to connect with the work of LFA please let us know.

Pain is an issue that impacts more women than men, and young women facing pain and cancer are in a difficult position as both these are seen as older person's conditions. Young women in this situation face tough choices about fertility, breast surgery, and are thrust into rounds of debilitating chemotherapy just to stay alive. Painaustralia CEO Giulia Jones is one of these women; she is currently undergoing chemotherapy for breast cancer. Support Giulia and other young women like her when she shaves her head on 31st July 2023. The funds will support young women with cancer and living with pain. So Brave, and Painaustralia, the peak body representing those in chronic pain will be the recipients of all donations which will help young women with cancer and young women with chronic pain. So Brave is working to get a blood screening test available to all young women which has a higher detection rate than even current breast screening tests and is likely to have a higher uptake rate than breast screens. This is a really great innovation which will save young women’s lives. Painaustralia is working to see young women and those with chronic pain taken more seriously and treated more thoroughly at the GP level when they seek care. We are both working for significant change to young women’s lives. Donations to the Headshave can be made at the following link: https://lnkd.in/gt7vE9mt From Painaustralia CEO: “While I was diagnosed at 43 and after having kids, many young women have a much harder time of all the choices they have to make. Chemotherapy and surgery are confronting and very hard to go through. I want younger women with breast cancer like I have to feel that they are seen and supported. SoBrave is an amazing charity focussing on young women with cancer. They send women information but also letters from other women who have been through the same thing. In the overwhelming tidal wave of information, I was given with my diagnosis I found that these letters were the most helpful and empowering tool I was given as to how to tackle this challenge. When seeking breast scans for cancer at a younger age there are more barriers and sometimes medical professionals discount the possibility of cancer, because it is seen as an older person’s issue, I also know that when young women have chronic pain they are often dismissed and experience a bias against them when seeking relief from for example chronic pelvic pain. So there is so much more for us to do in health advocacy for young women.” Giulia Jones said. Canberra times article: https://lnkd.in/g-r-XVCb

Cystic Fibrosis Fighters like Steph are simply asking for the one thing we all take for granted - time. More time to hope that one day, she and the thousands of others like her who can't take the life-saving treatments currently available might be able to experience that "deep breath" of relief once a cure is found. Steph's story moved me deeply, the conflicting feelings of joy and despair watching others with CF blaze forward while you feel left in the dust waiting for your turn. But her story, like the history of cystic fibrosis itself, is a story of metamorphosis, of transforming hopelessness into a drive for change and relentlessly chasing that brighter tomorrow. While we've seen miraculous developments in the cystic fibrosis community over the last few years, we are simply not done yet. Help us drive out CF once and for all! Visit https://lnkd.in/gpZ3m3Ya 💙 Every donation goes directly to the Cystic Fibrosis Foundation, Georgia Chapter, funding critical research for CF treatments. #cysticfibrosis #UntilItsDone

Thank you to everyone who has donated so far in honor of Iris and her Sweet 16! We’ve raised: $7545 (without match applied) Double your donation up to $16K through Rare Disease Day, 2/29! curegm1.org/donate (option for no fees with PayPal Giving Fund) or https://lnkd.in/gyWHUGEb Your help is critically important to all those dying due to GM1 gangliosidosis. You can help make a difference. 10+ years ago, Iris was just about to start kindergarten when our world was completely changed forever and shaken by a fatal diagnosis of GM1 gangliosidosis. Doctors who were uninformed about juvenile GM1 told us that she had over 5-10 years left to live and she's still here, still fighting for every single day and moment. We founded the Cure GM1 Foundation in her honor and in honor of all those suffering from GM1 gangliosidosis. Significant strides have been made. There have been 4 clinical trials since 2019 and there were no trials prior to the creation of Cure GM1. Tragically, only one trial is still running, the remaining trial is in Phase 3, the final stage. To make matters worse, rare disease programs have been shuttered due to a downturn in biotech and gene therapy. We try to remain hopeful, but the reality is that this fight continues and more help is needed. Children and babies are dying while programs are shelved. The science is known on how to help and yet programs are stopped due to money. There are still many ways that we can contribute to help, including next generation therapies, newborn screening, continued advocacy, and more. Thank you. Please kindly share and spread the word. Music by BenSound. #curegm1 #raredisease #advocacy #birthdays #donate #give #hope #fightforlife #smallactionsbigimpact

Time really does fly! In 2023, I was the RARE KNIGHT! Organized by Avanzanite Bioscience, standing before biotech executives, investors, advisors, and #raredisease advocates, I found myself in a room filled with individuals passionate about making a difference in the realm of rare diseases, in my case #acanthamoebakeratitis. It was an incredible and somewhat humbling experience to share the #patientsperspective on the impact of this rare disease both during and after. I will forever appreciate being giving this title, as well as the support towards our mission at the Acanthamoeba Keratitis Eye Foundation. It is time to show support for #Nephrokids, who are dedicated to addressing #chronickidneydisease. Only those who have experienced this disease firsthand or witnessed a loved one struggle with it can truly grasp its impact. Here is another remarkable #raredisease #foundation established by individuals who have directly experienced the patient's perspective and are eager to make a positive change. Attending the #event or making a #donation can truly have a significant impact! #fundraising #makingadifference #charity, #orphandrugs, #patientadvocacy, #nephrologist, #paediatric,  #nephrologie, #biotech, #community, #kindernephrologie,

Thank you to everyone who has donated so far in honor of Iris and her Sweet 16! We’ve raised: $7545 (without match applied) Double your donation up to $16K through Rare Disease Day, 2/29! curegm1.org/donate (option for no fees with PayPal Giving Fund) or https://lnkd.in/gktBZ5Vb Your help is critically important to all those dying due to GM1 gangliosidosis. You can help make a difference. 10+ years ago, Iris was just about to start kindergarten when our world was completely changed forever and shaken by a fatal diagnosis of GM1 gangliosidosis. Doctors who were uninformed about juvenile GM1 told us that she had over 5-10 years left to live and she's still here, still fighting for every single day and moment. We founded the Cure GM1 Foundation in her honor and in honor of all those suffering from GM1 gangliosidosis. Significant strides have been made. There have been 4 clinical trials since 2019 and there were no trials prior to the creation of Cure GM1. Tragically, only one trial is still running, the remaining trial is in Phase 3, the final stage. To make matters worse, rare disease programs have been shuttered due to a downturn in biotech and gene therapy. We try to remain hopeful, but the reality is that this fight continues and more help is needed. Children and babies are dying while programs are shelved. The science is known on how to help and yet programs are stopped due to money. There are still many ways that we can contribute to help, including next generation therapies, newborn screening, continued advocacy, and more. Thank you. Please kindly share and spread the word. Music by BenSound. #curegm1 #raredisease #advocacy #birthdays #donate #give #hope #fightforlife #smallactionsbigimpact

Get ready to dive into our latest blog post, "An Apple A Day," where we're shedding light on the importance of organ donation during National Donate Life Month! 💙 From inspiring stories to vital statistics, we're unpacking why every registration counts and how you can make a life-saving impact. Read the full blog:https://hubs.ly/Q02sfTfx0.

Today is World Neurofibromatosis (NF) Awareness Day. As many of you know, our family has battled with NF over many years. This month, I have taken on the challenge to walk 3400kms with the Barney Army this month and raise $15k! NF is a complex, unpredictable and progressive genetic condition that causes tumours to form on nerves, under the skin, and deep in the body. But importantly, it can affect anyone regardless of gender, ethnicity, or family history.  Highly variable, around 1 in 5 children with NF1 will develop a brain tumour; 1 in 4 will develop chronic pain, spinal tumours are seen in 60-80% of NF2 patients, and on average, the lives of those living with NF1 will be reduced by 10-15 years compared to the average population. TODAY is World NF Awareness Day and today all donations will be DOUBLED.    Thanks for reading and your support!   https://lnkd.in/g4uHRQnu   #conquernf

Definitely worth a watch