Roper St. Francis Healthcare’s Post

Join the 2024 SRF Research Challenge to support research like Dr. Flynn's! Dr. Ryan Flynn (Harvard University, Boston Children's Hospital) shares information about his SRF-funded research project, Cell Surface GlycoRNAs in Autoimmunity, and how it could help people living with scleroderma. Your support of innovative research like Dr. Flynn's, and other projects funded by the SRF, helps advance our understanding of this disease. By joining this year's Research Challenge, you'll be a part of the next era of breakthroughs that could end scleroderma. Will you help us accelerate the pace of research so that we can one day end this disease? The best part is that when you make a gift to our Research Challenge, you’ll unlock a matching donation dollar-for-dollar*, thanks to the generosity of two families who, like you, are committed to finding a cure. Double your impact today: https://bit.ly/3RWrUOo P. S. Special thanks to our Research Challenge match donors—Board Members Luke Evnin (Chairman) and Deann Wright, and the Schimberg Family Foundation—for doubling the impact of your gift! *Up to $75,000 through July 31, 2024. #srfcure #sayscleroderma #sclerodermaresearch #scleroderma

The Myasthenia Gravis Foundation of America (MGFA) hosted its first MG walk in Boston since the COVID-19 pandemic. It was a pleasure to volunteer, organize, and be part of it and meet the amazing people in this community. This walk was a great opportunity to connect with MG patients, caregivers, and advocates. For those who don’t know, Myasthenia Gravis is a rare autoimmune disease where autoantibodies attack different receptors in the skeletal neuromuscular junction. In short, Myasthenia Gravis patients experience rapid fatigue of muscles that affects their everyday lives. We also surpassed our $15,000 fundraising goal. These fundraisers are critical for advancing research and treatments for Myasthenia Gravis. As Kevin O’Connor, a Yale principal investigator focused on Myasthenia Gravis and rare disease research, said: “The work that MGFA does is important not only for patients but also for researchers, as it provides us with the funds needed to understand the disease and better target it for treatment.” #AWorldWithoutMG #MGStrong #Research #PatientAdvocacy 

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,

Today is #WorldHealthDay 2024, and this year's theme is 'My health, my right'. 🏥 This theme was chosen to champion the right of everyone, everywhere, to have access to quality health services, education, and information. At Pancreatic Cancer Action, we're dedicated to empowering individuals with the right to access education and information about pancreatic cancer. Since 2017, we've proudly distributed over 22,000 health information booklets free of charge. 💪 Additionally, these booklets are certified by the Patient Information Forum, ensuring the health information in our resources is of the highest quality. 📚 You can order your free health information booklets amongst other free awareness materials here: https://lnkd.in/eHnY8KyE 💜 Or support our work by donating today, and help us reach more people with our health information: https://lnkd.in/gNK__EE #MyHealthMyRight #WorldHealthDay

At the Patient & Family Colorectal and Urogenital Webinar conducted by the International Center for Colorectal and Urogenital care of Children's Hospital Colorado and The Hendren Project, Alberto Peña, M.D. gave an excellent talk on the overview of Anorectal malformations. He talked about the "Saga of the patient and family with anorectal malformation" which is comprised of the following 5 phases (similar to the Maslov model): 1) Shock (parents shocked to hear the news of the congenital defect) 2) Confusion (lack of knowledge / uncertainty / fear 3) Anger (blaming self / others / why me?) 4) Acceptance and Love (improved understanding / better management) 5) Meaning and Inspiration (developing expertise / helping others / paying it forward / creating hope and system solutions) Many patients and families can relate to this saga and this progression. Pull-thru Network aims to offer #support #advocacy #information to anorectal malformation patients as they traverse through own journeys. You can support Pull-thru Network by donating: https://lnkd.in/g4X7XQ7p #phases #saga #progression #anorectalmalformation Andrea Bischoff Rachel Hayden Lori Parker Devesh Dahale

It's the last day of #Sarcoma month, but the fight to find new and better treatments for one of the deadliest #Cancers primarily affecting #Children continues.🧑🏽🔬 We're excited to announce a new program, #SarcomaAccelerator, funded by the Hofer Muir Philanthropic Organisation together with the Cooper Rice-Brading Foundation. 🙌 For the next two years Prof Ron Firestein, A/Prof Jason Cain and their team will create a collection of #Tumour samples from sarcoma patients and use cutting-edge technology to study these them. “By understanding the unique characteristics of each tumour, we can develop targeted therapies that are more likely to be effective. This approach has the potential to improve survival rates and quality of life for young patients living with sarcoma.” A/Prof Cain Read more about how we expect this new program to be a game-changer in the fight against childhood sarcoma here: https://bit.ly/3AdTU9V L-R; Dr Yuxin (Sally) Sun, A/Prof Jason Cain, Dr Claire Sun, Prof Ron Firestein

https://lnkd.in/g-U4cgaT As many of you know, I have had a lot of titles in life: Director, Manager, Category manager. However, none of them are more important than the titles of Mother, Wife, Daughter, Sister, and Friend. One of the titles I also hold is Chair for the West Michigan Light the Night Walk. This cause has been near and dear to my heart for years now, as my little brother fought and lost his battle with Acute Myeloid Leukemia, August 21st of last year. I encourage anyone who is near to sign up to attend the walk and show your support: https://lnkd.in/g_SwYP5C For those you wishing to show support in other ways I encourage you to reach out. My fundraising page is below, and I have a personal goal of $5,000 dollars. The dollar amount seems so little compared to what this horrible disease actually cost my family, but I will do whatever it takes to ensure no family has to go through what we have, and I know LLS is just the organization that can do it. Many of you on my feed are influential in your organizations, and I encourage you to reach out to Madison Morell and find out how you and your organization can get involved. Corporate walk and fundraising teams are incredible ways to help your organizations create a positive lasting impacts on your communities, and with more than 1 out of every 2 people being touched by a cancer diagnosis, you are impacting your teams as well. Help me reach my personal goal but think bigger and bolder: help US cure cancer. #leadership #cancer #LLS #philanthropy #grief #worklifebalance

In case you missed it.. ..our latest monthly episode is LIVE on our YouTube channel! Our inspiring guest, Robert Chelsea, the 1st and oldest black man in the world to receive a full face transplant had his face severely disfigured in a car crash accident. A face transplant was set to change his life in a massive way but, it took his medical team years to get the exact match of his skin color for that to happen. It is the reason Cancer Convos with Grace B. is collaborating in raising awareness about organ donation, especially in minority communities, to commemorate National Minority Donor Awareness Month held annually in August. Our recent episode is summarized in this short video, but you need to watch the full episode to listen to the inspiring story of Robert Chelsea, who we cannot cease to be in awe of. Indeed, he is paying his experience forward in an important and impactful way with his Foundation which is raising organ donation awareness. We know that organ donation saves lives, improves health, reduces long-term medical costs, helps medical research, and leaves a lasting positive impact on humanity but how many tick the box when they come across it? 🤔 So, #linkedin family, if you have not given it a thought, next time you see that box, give it a ☑️ I know I will. #cancerconvoswithgraceb #skingraft #organrecipient #organdonationawareness #NationalMinorityDonorAwarenessMonth #changemakers #leaders #burnvictim #facetransplant #healthcare #MedicalCommunity #MedicineMatters #healthpromotion #talkshowhost #womenwholead #MedicalAdvancements #organdonorssavelives

🎗️ Childhood cancer affects millions of families worldwide. Let's shed light on the latest statistics 📊 and stand together in the fight against this devastating disease. 💬 Share Your Thoughts: What steps can we take as individuals and communities to support children battling cancer and their families? Share your ideas and experiences in the comments below! 🌟👶 Visit 🌐 www.humanata.ca and ✅ follow👉Humanata. For enquiries, write to us at 📩 hello@humanata.ca Humanata | #CancerAwareness #CancerTreatment #MakeAnImpact #HealthCare #HealthTech #MedicalResearch #Nonprofits #Community #Leadership #Philanthropy #SocialImpact #DataAnalytics #Aiforgood #NonProfitOrganization #Networking 

It is crucial that health research represents everyone. Gaining a deeper understanding of diverse health needs and outcomes will lead to better care for all communities.