Profit Recovery Partners’ Post

Families are done with hearing "wait and see," "they'll catch up," or "it's too expensive." These dismissive phrases undermine the urgency and power of early diagnosis. The reality is, families deserve to know - because knowledge is power. A diagnosis isn't just a label - it’s a beaming gateway to understanding, treatment, community and a world of possibilities. Read this new publication about a fellow CTNNB1 mom who, instead of waiting for the system, took matters into her own hands with direct-to-consumer genetic testing. The result? She unlocked crucial intensive therapies for her daughter at the most critical time, securing mobility that many of our kids never get to experience. Her daughter was checked for FEVR before blindness could set in and checked for tethered cords before severe complications arose. Her proactive approach didn't stop there - she attended our international conference, learned about gene therapy, connected with families, and has raised funds for research - all in a matter of months. This is why a diagnosis matters. It’s why parents are no longer willing to be passive. They're informed, they're capable, and they can handle anything that comes their way. That's one of the things that Once Upon a Gene is all about - empowering families with the knowledge they need to take control and change the status quo. Meghan Bartos CTNNB1 Connect & Cure CTNNB1 Foundation https://lnkd.in/gFbDzNwS #CTNNB1 #AdvocateLikeAMother

With this study in mind, researchers can address challenges and implement changes that protect our first responders https://lnkd.in/g2P8n-wr

Tomorrow (7 September) is World Duchenne Awareness Day #WDAD2024, the official global annual campaign committed to raising awareness for those affected by Duchenne and Becker muscular dystrophy. Duchenne muscular dystrophy is a severe neuromuscular disease that causes progressive muscle weakness. This catastrophic and complex muscle-wasting disease has no cure, it is caused by a change in the dystrophin gene on the X chromosome, and primarily affects boys. There are over 250,000 people worldwide living with Duchenne and Becker muscular dystrophy. This year's theme is "Raise your voice for Duchenne" and Bionical Emas are proud to join the voices across the globe advocating for the rights, inclusion, and well-being of people living with Duchenne and other dystrophinopathies.   More information can be found by visiting https://lnkd.in/gf8Ku2A and by visiting the active network of patient advocacy groups supporting Duchenne patients and their families. #WorldDuchenneDay #WDAD2024 #Duchennemusculardystrophy #Duchenne #RareDisease #MuscleWeakness #BionicalEmasSupports

New research reveals a higher prostate cancer risk for firefighters exposed to certain chemicals on the job. Dr. Jeff Burgess and the team from the Center for Firefighter Health Collaborative Research collaborated on the research funded by FEMA. Read more here! bit.ly/3ywRSAU #FirefighterHealth #ChemicalExposure #MEZCOPHResearch #FEMA

With this study in mind, researchers can address challenges and implement changes that protect our first responders https://lnkd.in/gWpVGrS7

✨ Introducing Dilip Malipatlolla, a 2024 Women and Children's Health Research Institute postdoctoral fellow ✨ #DYK that more than half of all gynecological cancer patients receive radiation, which can be highly effective and significantly increase the success of their overall treatment. Approximately 90% of pelvic cancer survivors experience a permanent change in bowel habits, with 50% facing difficulties in daily activities. Malipatlolla, alongside supervisors Armin Gamper and Geetha Menon, is working to establish a new animal model to study the underlying mechanisms of long-term radiation side effects, particularly to the colorectum. 🔗 Click here to learn more: https://lnkd.in/eu-zyXkP #WCHRIPDF2024 #RefocusTheResearch

Consumer involvement throughout the research process is increasingly important to ensuring the quality, transparency, and impact of cancer research. In the most recent edition of The Health Advocate: “Consumers in Focus”, two articles about consumer involvement in the Gibbs Lab were published 🌟 Follow the link below to read about the role of consumers as co-researchers in the interpretation and analysis of qualitative research data (page 16), and the importance of evaluating the impact of consumer involvement from a consumer’s perspective (page 22). Thanks to the consumers whose involvement in our work is invaluable 🤝 https://lnkd.in/gw3R_dsS

This soon to be published book brings together for the first time current global data about Indigenous and Tribal peoples’ experiences with cancer. This book is the first comprehensive publication to report on cancer incidence, mortality, prevalence, survival, and inequities for Indigenous and Tribal peoples globally, with the aim of enhancing global efforts to improve outcomes for these populations. Check it out. Thank you to book chapter lead author Va'a Tofaeono on "Health Literacy Research: Lessons Learns Utlizing the Lens of 'Alag'up (Samoan Proverbs)" https://lnkd.in/gTGQt4kj

Shedding light on not-so-hidden issues affecting cancer patients. Dr. Andi A. is leading research on cancer-related fatigue and its under-treatment, as well as cancer-related discrimination, with the support of a prestigious Fatigue Fellowship from The Multinational Association of Supportive Care in Cancer (MASCC). Her work aims to develop a toolkit to help healthcare providers implement effective fatigue management programs and to shed light on the challenges faced by cancer survivors, including issues related to employment and insurance discrimination. Read more 🔗 https://lnkd.in/gYGDHt8X 🌐 Caring Futures Institute Creating better systems, better care, and better communities for better lives. 🔍 Explore our impactful research | 💡 Join us in shaping the future of healthcare hashtag #CaringFutures #CancerSurvivorship #CancerTreatment #CancerCare

Register now for the upcoming Jamaica Cancer Care and Research Institute retreats! ✅ Expand your skills and knowledge in psychedelic facilitation. ✅ Be one of the first in your field with legal practical experiences. ✅ Join the developing psychedelic community with #JACCRI! #retreat #psychedelictherapy #psychedelicscience #psychedelics