This is a very cool! Taneal D. Carter, MS, MPA thank you for sharing!
We’re going sailing— and you’re invited! Sailing Heals has invited us to join one of their sails. This incredible organization hosts people who are navigating cancer and serious life-threatening illnesses on restorative sailing excursions. Cancer patients and a “plus one” are invited to join us at Pickering Wharf Marina 86 Wharf St. Salem, MA on August 21st. 12PM - 2PM! Check out their website to learn more.
Skin diseases, often seen as cosmetic concerns, can be life-altering. Witnessing the struggles of eczema sufferers, including my own past experience, highlights the urgency for increased research. The social stigma and constant discomfort are immense, especially for young children. This long-awaited focus on skin research promises exciting discoveries and solutions and I look forward to our medical professionals' insights! #QualityofLife #PatientAdvocacy
Eczema affects 1 in 5 children here - some have it as a lifelong disease. It is not simply a minor discomfort, but caused suffering, stigma and puts constraints on lifestyle and activities. It can be costly to treat as well. Just imagine having to live with a rash and itch that doesn’t go away! It was with a goal to do more for eczema patients that we started the Skin Research Institute (SRIS) 10 years back. At the beginning, there were many detractors who trivialised skin disease and regarded it as less important than cancer, heart and other conditions. But I’m thankful the team stood its ground. We now have world class skin research right next to the National Skin Centre, which is also in a class of its own. This grant for eczema has been a long time coming, but provides affirmation that skin research has finally found its place in our local ecosystem. It has taken 10 years, but what a wonderful anniversary present!
Last week, Christine Waggoner, founder and CEO of Cure GM1 Foundation, was one of the few speakers invited to present at the FDA's first Rare Disease Innovation Hub public meeting! This groundbreaking FDA initiative marks a significant step forward in accelerating treatments for rare diseases. The Hub aims to streamline development and approval processes while keeping patients' needs at the center - exactly what our rare disease community needs. Through Christine's leadership, Cure GM1 Foundation continues its tireless dedication to advancing treatments for GM1 gangliosidosis. Her voice at this forum represents not just the GM1 community but highlights the urgent reality we face in rare diseases where time is literally life. The FDA's commitment to enhancing collaboration and creating a more efficient pathway for rare disease treatments gives us HOPE. In Christine's words, "Our children are dying and have been dying for decades when possible treatments are known." This Innovation Hub could be the catalyst we need to change that reality. About: https://lnkd.in/gGtpUTKC Please join us in our critically important work: curegm1.org/take-action curegm1.org/donate #RareDisease #FDA #Healthcare #Innovation #PatientAdvocacy #GM1
It was an incredibly hopeful day at the FDA for the first public meeting of the new Rare Disease Innovation Hub! Thank you to the Reagan-Udall Foundation for the FDA for organizing the meeting. The day was filled with insights from passionate stakeholders, advocates, and members of the rare disease community. We are grateful that we could represent the GM1 community and our truly urgent need for treatments. Our children are dying and have been dying for decades when possible treatments are known. ABOUT: https://lnkd.in/gGtpUTKC Please join us in our critically important work: curegm1.org/take-action curegm1.org/donate Stay tuned for more posts! It was a pleasure to see so many friends from the broader rare disease community. National MPS Society National Tay-Sachs & Allied Diseases Association EveryLife Foundation for Rare Diseases Critical Path Institute (C-Path)
Sharing more about ALS!
Before the Ice Bucket Challenge, government funding and support for ALS research and care were not given the same priority as others in the disease space such as cancer or heart disease. Since the Challenge, however, with the help of advocates nationwide, we’ve been able to make significant progress and impact for the ALS community. Learn more: https://lnkd.in/eM6dsYkG
Patient Engagement Specialist -Sanius Health an AI-powered patient-generated data platform with a focus on accelerating personalised medicine, drug discovery & research
Living with Sickle Cell Disease for 31 years has been a journey of resilience, hope, and defying the odds. If you had asked me years ago if I thought I would be in my dream job at Sanius Health or a mother to three amazing children, I would have said no. Yet, here I stand, a testament to the power of perseverance and the indomitable human spirit. Sickle Cell Disease has been a constant companion, bringing with it immense pain and challenges that most can't fathom. But it has also taught me invaluable lessons about courage, strength, and the importance of cherishing every moment. On this Sickle Cell Awareness Day, I reflect on the countless warriors who have fought this battle alongside me, and I remember those we've lost along the way. While sickle cell has shaped my life in many ways, it does not define me. I am more than my illness – I am a professional, a mother, a friend, and an advocate for change. Today, I ask you to join me in raising awareness about this often-overlooked disease that affects millions worldwide. Educate yourself about Sickle Cell, its impact on individuals and families, and the urgent need for research and better treatments. Understand the daily struggles, the hospitalisations, and the constant fear that accompanies this condition. If you can, please consider donating blood – a simple act that could save the life of someone living with sickle cell. Your donation could mean the world to them, providing relief and hope during their darkest moments. Together, we can break the silence surrounding Sickle Cell Disease. Together, we can fight for better healthcare, more resources, and a future where no one has to suffer from this debilitating condition. On this day, I stand tall, proud of my journey, and determined to make a difference. Join me in spreading awareness, showing compassion, and creating a world where every warrior with Sickle Cell can live their dreams, just as I have. #SickleCellAwarenessDay
January is Firefighter Cancer Awareness Month. Take a moment to read about the preventative practices your department can implement right now to proactively reduce your risk. Learn More: https://lnkd.in/e9V7ujum #fightffcancer #firefighting #fluorinefree
Did you know that today, February 29, is Rare Disease Day? This important event is dedicated to raising awareness for patients, families and caregivers around the world affected by rare diseases like sickle cell disease. For Rare Disease Day, the Sickle Cell Disease Association of America, Inc., (SCDAA) has set an ambitious goal of raising 15K! Will you help? Your support can enhance SCDAA's efforts to positively impact the lives of those affected by sickle cell, ignite change through education, awareness and advocacy, and support research which continues to lead to historic breakthroughs in the treatment of this disease. https://lnkd.in/eR6EGWUA
Black Community Supporting Sickle Cell Fighters The most common way people give up their power is by thinking they don't have any.—Alice Walker Did you know that you have the unique ability to decrease the pain and suffering of a Sickle Cell Fighter ? Sickle Cell Awareness is important, especially for the more than 100,000 individuals living with sickle cell disease – most of whom are of African descent and will require regular blood transfusions to help manage their disease. 🩸Sickle cell disease distorts soft and round red blood cells and turns them hard and crescent shaped, which can cause individuals to experience extreme pain. 🩸Individuals with sickle cell disease can require frequent blood transfusions throughout their lifetime to treat complications of their disease. Blood donations from individuals of the same ethnicity and blood type have a unique ability to help patients fighting sickle cell disease. 🩸 Diverse Blood shortages can be particularly concerning for Sickle Cell Fighters which is why we are urging many diverse individuals to give. BW4HL is committed to advocating for Sickle Cell Fighters by bringing awareness of the importance of Black Blood Donors. We are asking the Black Community to please support our Sickle Cell Fighters. Please join us on Friday, February 23rd by registering online by clicking the link below or the QR Code. #BW4HL #SickleCellAwareness #blackblooddonorsmatter https://lnkd.in/gfZAVCXm
The number one leading cause of bankruptcy in the USA is caused by the indirect coasts associated medical treatment. Do you know a first responder? #Cancer #cancercare #cancersurvivor #cancerprevention #cancersupport #cancereducation #cancerscreening #cancerfighter #cancertreatment #supplementalbenefits #supplementalincome #supplementalinsurance #SupplementalHealth Cancer is the leading cause of death in the fire service, but we can take steps to reduce the risks together. Regular and early screenings Better physical health Healthier eating habits and more can be found here: https://lnkd.in/g-93U_Q5 / Watch this video with IAFF General President Ed Kelly on MSNBC to understand the real risks and dangers that firefighters face across North America. FCSN is here to educate firefighters on how to reduce their occupational cancer risks and to advocate for change and protection within the fire service at large. Together, we can: Provide comfort, strength, and hope by sharing our own experiences with the devastating effects of cancer Educate fire/EMS members about the importance of cancer screenings and early detection Promote an understanding that cancer does not have to be faced alone
Day 11: Firefighter Cancer Awareness Month. Here we look at using rescue wipes post incident. What do your fire departments use? @FCSNnational https://hubs.li/Q02g6LcJ0
Did you know that September is National Sickle Cell Awareness Month in the US? 🩸 Sickle cell disease (SCD) is an inherited blood disorder in which red blood cells may become sickle-shaped and harden. This causes complications including chronic severe and unpredictable pain, anemia, swelling, fatigue. SCD is not contagious, but there is no universal cure. An estimated 100,000 people in the US live with the disease. People with SCD can live full lives, and blood transfusions are one of the most critical treatments for patients. Once again, donations can truly make a difference—especially while the American Red Cross has declared an emergency blood shortage after its national blood inventory plummeted more than 25% in July. Learn more at https://lnkd.in/eHuJhD6
