Castleman Disease Collaborative Network’s Post

Today, on World Parkinson's Day, MediRecords proudly supports the Shake It Up Australia Foundation, in the fight to #SlowStopCureParkinsons. 🧡   Our Founder and CEO, Matthew Galetto, said, "Our company's decision to support the Shake It Up Foundation is deeply rooted in both personal connections and a shared commitment to making a difference in health. The Foundation, with its focus on finding treatments and cures for Parkinson's disease, aligns with our values. The founders of Shake It Up Australia, Carolyn and Clyde, are long-standing family friends with shared experiences over 25 years, adding a profound personal dimension to our support.   What sets the Shake It Up Foundation apart is its operational model—every penny raised is channelled directly into groundbreaking research. This is made possible by Carolyn and Clyde's generous commitment to cover all administrative overheads personally, ensuring that all donations have the maximum impact. Moreover, Clyde's personal journey with Parkinson's disease and his determination to be proactive in the fight against it, rather than being defined by the diagnosis, is nothing short of inspirational.   It's this blend of personal connection, fiscal responsibility, and resolve that has guided our decision to support Shake It Up Foundation."   Join us in helping Shake It Up Australia Foundation for Parkinson's Research in their vision for a world without Parkinson’s by pledging a donation today. 100% of all donations go directly to ground-breaking Australian research. Together, we can make a world of difference. - https://lnkd.in/gK6BxHHk #WorldParkinsonsDay #ParkinsonsAwarenessMonth #ParkinsonsResearch #ShakeItUpAustralia

This week in drug discovery (21-25 October) News round-up for 21-25 October by DDW Senior Digital Content Editor Diana Spencer. With a presidential election just round the corner in the US and a new UK budget on the way, financial support for life sciences is high on the agenda, so the news round-up this week focuses on investment in drug discovery, by private investors, governments and charities. https://lnkd.in/eWx2BpJg #DrugDiscovery #LifeSciences #Funding

Did you know Tomorrow's Leaders across the country are participating in a Rose Up Challenge? TOMORROW’S LEADERS VS. GRAMPIONS  The goal: To get 65 Tomorrow’s Leaders and Grampions to participate in ROSE UP by October 24. The challenge: Who will recruit more participants? The Tomorrow’s Leaders or the Grampions? The prize: Ultimate bragging rights. How do I ROSE UP? It’s easy. Start by registering and choosing an activity that is meaningful to you.  Now what?  Raise awareness about CF by sharing how you will ROSE UP on social media! Once you've shared on your socials, you can give your friends and family the option to donate in support of your efforts. Use the hashtag #ROSEUPCF on your posts. When you raise $65 or more for ROSE UP, you are eligible to earn great rewards while continuing to support our search for a cure. Anyone who raises $100 or more for ROSE UP can immediately claim a ROSE UP T-shirt. Start fundraising to see all the other rewards you’re eligible for, including Foundation-branded gear from Nike, Vineyard Vines, and Patagonia, and more. Wait, there’s more! This year, The Delaney Binker Family Cure Cystic Fibrosis Miami Foundation has kindly offered a $20,000 incentive opportunity! Beginning August 1, 2024, the first 20 participants who launch a passion fundraising event on the passion fundraising platform for their ROSE UP campaign and raise $1,000 or more will receive an additional $1,000 contribution from the incentive toward their event to amplify their impact.  Sign up today: https://lnkd.in/e44y6WpS

Today, Our Executive Director, Joost J. Breeksema, will chair the official launch of the PsyPal Project at the European Parliament in Brussels where other partners PAREA, UMCG research, EAPC Head Office, European Federation of Neurological Associations & Long Alliantie Nederland will be present. This research seeks to alleviate psychological and existential distress among patients confronting progressive incurable illnesses that require palliative care. "In the PsyPal project, OPEN Foundation will be jointly responsible for making sure that patients have continuous access to (peer) support, not just during the clinical trial phase, but also afterwards. This may be a difficult phase for some people, and we think it is crucial to provide extensive support, enabling participants to process profound and sometimes difficult experiences.” - Joost J. Breeksema Get involved: 1. Discover the Pathways to Access Summit (Paths) held on 5th June 2024 in Haarlem: https://lnkd.in/eXFQBp3r 2. Access the recording of the PsyPal launch by completing the registration form below: https://lnkd.in/eSFmt6-t 3. Show your support through a donation. Donations over 100 euro, will be granted access to 12-month OPEN community membership!: https://lnkd.in/eCY9y_Wn

Would you like to find out more about our involvement in leukodystrophy research? 🔬👨🔬 We understand that research is a significant priority and as a charity we: 🔵 Link leukodystrophy patient, clinical and research communities 🔵 Provide direct support for research 🔵 Help our patient community understand research Visit our 'Research and Alex TLC' page to find out more: https://lnkd.in/ej3q2fUn #alextlc #leukodystrophy #helptocope #helptohope

💚One of the essential ways the Potocki Lupski Hope Research Foundation sustains its activities is through donations. These donations play a crucial role in supporting ongoing research projects & raising awareness about PTLS. 🔬Fund Cutting-Edge Research: Your donation will directly fund vital research projects, enabling scientists to delve deeper into the complexities of PTLS, develop innovative therapies, and work tirelessly towards a cure. 🗣️Raise Awareness: Your support will allow us to increase public awareness about PTLS and advocate for more resources within the medical community. The more awareness we generate, the closer we come to unlocking the mysteries of this syndrome. 🫂Collaboration and Innovation: We believe that by fostering collaboration among researchers, medical professionals, and support organizations, we can fast-track progress in the field of PTLS research. Your contribution will help bridge the gap between these groups. 🌟You can find our website link to donate in our bio!🌟

As we wrap up #HealthyVisionMonth, recognized by National Eye Institute (NEI), a division of the The National Institutes of Health, ReBio Pharma acknowledges the millions of people living with #glaucoma and other eye diseases around the world, and encourages everyone to take care of their eye health! We know eye exams are so important but are not always affordable. That’s why we wanted to share NEI’s resources for helping you access low-cost eye care. This resource page shares information on many US-based charities and other organizations that may be able to help, including VSP Vision, Lions Club International, the American Glaucoma Society, the National Federation of the Blind, and more. Resources: https://lnkd.in/ervGN9eT The NEI’s mission – to eliminate vision loss and improve quality of life through vision research – is one we celebrate and share wholeheartedly. #EyeHealthEducation #drugdevelopment #ReBio #lowvision #blindness #visuallyimpared

Despite Type 1 Diabetes management advancements, exercise-induced glycemic variability remains a challenge, risking hypoglycemia and hyperglycemia. We are pleased to be collaborating with Dana Lewis, Rayhan Lal, Dessi P. Zaharieva, Emily Fox, Ramesh Johari being funded by the Helmsley Charitable Trust's $12M grant to the T1D Exercise Initiative to develop a personalised decision support tool. Abiodun SOLANKE, Ph.D., Ahtsham Zafar, Chan le Van #AI #Exercise_management #automated_insulin_delivery #T1DEXI

Would you like to find out more about our involvement in leukodystrophy research? 🔬👨🔬 We understand that research is a significant priority and as a charity we: 🔵 Link leukodystrophy patient, clinical and research communities 🔵 Provide direct support for research 🔵 Help our patient community understand research Visit our 'Research and Alex TLC' page to find out more: https://lnkd.in/ej3q2fUn #alextlc #leukodystrophy #helptocope #helptohope

Hi There, I hope and trust all is well with you. Our annual fundraiser for the MS Society- Bike MS Bay to Bay Tour is this weekend. The Bike MS Bay to Bay 2024, a 150k two day bicycle ride to raise awareness and funds that support those living with Multiple Sclerosis ("MS") and also for cutting edge research that will lead to a Cure. Over the years Awareness, Treatment, Diagnosis, Research and knowledge about this disease has advanced exponentially. Resulting an improved life for people living with the disease and our community as well. I won't be alone. I lead an incredible extended family or as we like to call "Teamily" (team + family) that share a passion to serve, pay it forward and do good. (And have a little fun too!) Our group has grown. The first year we were 3 people and raised US$1100K. This weekend we will be 72 strong and have raised over US$160K to date. A few observations on what has contributed to where we are today. You may already know and practice these but here they are for your consideration and that hopefully you may find useful: • Invest in People - Happy, confident, trusting, inclusive and fulfilled people will enhance the experience for all. • Incorporate the concept of a Servant/Mentorship mindset into the entire Culture - Share with, encourage and support everyone. • Embrace change and thus resilience. "Activity over processes." Lance Secretan • Be passionate about what you are doing. "Attitude, not routine." Lance Secretan It has been an Honor and Privilege to have been on this little journey. #gsffoundation #1moremile #mssociety #msawareness #msadvocacy https://lnkd.in/ggnbB77T