Bridge Senior Living’s Post

You never really think that you'll join a rare disease community. I joined this community in 2017 when my mom was (finally!) diagnosed with multiple system atrophy and passed away a few months later. I'm honored to spend this Rare Disease Day 2024 with the board of The Multiple System Atrophy Coalition. In our board meeting, we're focusing on our 3-year strategic plan and whether we're headed in the right direction in three key areas: advocacy and awareness, research, education and support. 𝐇𝐞𝐫𝐞 𝐚𝐫𝐞 𝐚 𝐟𝐞𝐰 𝐟𝐚𝐜𝐭𝐬 𝐭𝐡𝐚𝐭 𝐀𝐋𝐋 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬 𝐬𝐡𝐚𝐫𝐞: 🤔 Lack of scientific knowledge and quality information often delays diagnosis (and doctors often get it wrong). 💰 It is challenging for people to get the healthcare and services they need, often resulting in social and financial burdens on patients. 🌐 Experts, researchers and doctors must collaborate globally to develop better treatments and cures. 𝐒𝐨 𝐰𝐡𝐚𝐭 𝐜𝐚𝐧 𝐲𝐨𝐮 𝐝𝐨 𝐭𝐨 𝐬𝐮𝐩𝐩𝐨𝐫𝐭 𝐭𝐡𝐞 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐜𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲? 🗣️ Use your voice (or vote) to advocate for rare disease legislation. 🤲 Donate to an accredited non-profit organization. 📘 Learn how you can support the rare disease community personally and professionally. The US-based National Organization for Rare Disorders is a tremendous global resource. #rarediseaseday2024 #multiplesystematrophy #rarediseaseawareness

🧡 Let's Raise Awareness for Motor Neurone Disease 🧡 Motor Neurone Disease (MND) is a relentless and devastating condition that affects thousands of individuals and their families. Today, I'd like to shed light on the challenges faced by those living with MND and the incredible work being done to find a cure. MND is a neuromuscular disorder that progressively affects the nerves in the brain and spinal cord. It can lead to loss of mobility, speech, and even the ability to breathe. The resilience shown by those fighting MND is nothing short of inspiring. 🙌 There are numerous organisations, researchers, and caregivers working tirelessly to support those with MND and fund research for a cure. Let's do our part by spreading awareness and supporting these efforts. 💪 Together, we can make a difference. Share this post to raise awareness for MND, and consider making a donation to organisations dedicated to finding a cure. Every small contribution can help us bring hope to those affected by this challenging disease. Let's stand together and work towards a future where MND no longer takes away our loved ones. 🌟 #MND #MotorNeuroneDisease #RaiseAwareness #HopeForACure

🟥 Today is REDS4VEDS Day! Join us in raising awareness for Vascular Ehlers-Danlos Syndrome (vEDS), a rare vascular disease that affects the connective tissues in the body. Here’s how you can get involved: 🔴 Wear Red: Show your support by wearing red and sharing photos on social media with the hashtag #REDS4VEDS. 🔴 Educate: Learn more about vEDS and share this information with your professional network. 🔴 Support Research: Consider donating to organizations dedicated to vEDS research and patient support. 🔴 Share Resources: Direct those affected by vEDS to resources and support networks, such as VASCERN, for the best care and information. Today and every day, let’s remember the strength and resilience of the #vEDS community and support them to receive the care they deserve. Learn more ➡ https://lnkd.in/e8KHauUu #rarediseases #vascular #ehlersdanlossyndrome #ehlersdanlosawarenessmonth #connectivetissues #geneticdisorder #vasculardisease #vascularhealth

🌟 Join us in Observing World Parkinson's Day! 🌟 Today, April 11th, marks World Parkinson's Day, a day dedicated to raising funds and awareness to support the search for a cure for Parkinson's disease. As a chronic and progressive neurological condition, Parkinson's disease profoundly impacts our ageing population. Did you know that approximately 25 Australians are diagnosed with Parkinson's every single day? Currently, there are around 80,000 Australians bravely living with this condition. At Deutscher Healthcare, we recognize the urgency and importance of finding a cure for Parkinson's disease. That's why today, we stand in solidarity with the Parkinson's community, advocating for increased awareness, research, and support. Let's come together to make a difference. Whether it's through raising awareness, participating in fundraising activities, or simply offering support to those affected, every action counts in the fight against Parkinson's. Did you know that Deutscher has solutions to increase safety and comfort for people living with Parkinson’s? Contact us to find out more. #WorldParkinsonsDay #ParkinsonsAwareness #FindACure #DeutscherHealthcare 🌐 To learn more about Parkinson's disease and how you can support the cause, visit: parkinsons.org.au

TODAY IS WORLD PARKINSON'S DAY! 🌎🌷 The European Parkinson’s Disease Association (EPDA) and the World Health Organization established World Parkinson’s Day on April 11th, 1997. April 11th is the birthday of Dr. James Parkinson🎂. He was the first physician to recognize Parkinson’s as a medical condition. He published an essay in 1817 called, “An Essay on the Shaking Palsy.” If you are wondering how to recognize World Parkinson's Day, here are a few ideas: - 💐 DO something special for someone you know with Parkinson's disease or their caregiver. Send a note, get them flowers, spend time with them, or give them a call. - 💰 DONATE to a Parkinson's charity. All Parkinson's charities help the PD community in their own way, but each one has their own distinct mission. For instance, PFWPA does not conduct Parkinson's research, but we do help the local PD community live their best life by offering exercise classes, support groups, personal consultations, caregiving resources, educational webinars, events, and more. Learn more here: https://pfwpa.org/ - 🧐 LEARN more about the disease so you can be more knowledgable and helpful if you are around someone with Parkinson's. Did you know that loss of smell and constipation are two common early warning signs of PD? Watch some of our educational videos on our YouTube channel to learn more! https://lnkd.in/e-cVQnth - 🗣️ SPREAD the word! It is important to spread awareness of this special day. Share this on your social media page or mention it to a friend. #pfwpa #WorldParkinsonsDay #ParkinsonsAwarenessMonth #parkinsonsresource #parkinsons #parkinsonsdisease #parkinsonscommunity

"You must be the change you wish to see in the world" This year's Bike MS: City to Shore Ride on September 30th and October 1st, provides another opportunity to affect positive change. Why We Fight MS Having multiple sclerosis means that you may suddenly have blurry vision. Or that your memory will fail you for no apparent reason. Or that you may not always be able to walk, let alone ride a bike. The symptoms of MS are different, and devastating, for everyone - the only certainty is that it will affect yet another person every hour of every day. Why I Ride I've registered for my 15th Bike MS because MS still exists and I want to do something for the people who have been diagnosed - and because I want to help to prevent more people from learning firsthand what it means to live with this disease. Today, there is still no cure for multiple sclerosis, and with diagnosis occurring most frequently between the ages of 20 and 50, many individuals face a lifetime filled with unpredictability. Why You Should Sponsor Me The National Multiple Sclerosis Society will use funds collected from Bike MS to not only support research for a cure tomorrow, but also to provide programs which address the needs of people living with MS today. Because we can fight this disease by simply riding a bike, because we have chosen to help thousands of people through a contribution to Bike MS, we are now getting closer to the hour when no one will have to hear the words, "You have MS." If you would like to join me on the ride, or would like to donate, or volunteer, or would like more information about MS, please visit my personal page: https://lnkd.in/dPWShP6r Thank you so much!

Project Scleroderma is the name of the organization I founded 13 years ago in honor of my mom who lost her life to an autoimmune disease called scleroderma. Today is Rare Disease Day. On this day it is important that we shed light on the fact that scleroderma is a rare disease and all those who suffer from this illness deserve our care & support not just today, but every day. It is crucial that we raise awareness and support for the scleroderma community in order to continue to advance treatments and get one step closer to a cure. It is equally as important that we pay attention to and educate ourselves on all the illnesses or conditions that are considered rare. Our attention and support are vital in order to save lives and advance research. Today is a day to focus on these rare causes, educate ourselves and support in any way we can. #scleroderma #sclerodermaawareness #awareness #raredisease #rarediseaseday #support #community #nonprofit #rarediseaseday2024 National Organization for Rare Disorders (NORD) at NCSU

Your experience with a fall, or the experience of someone you care about, can support Alzheimer’s care and research. We’re highlighting the impact falls have on those living with Alzheimer’s and other forms of dementia, as part of our recognition of Falls Prevention Awareness Month. Because 95% of falls go unwitnessed—and someone with cognitive decline may not be able to recall what occurred—it can be very challenging to help prevent repeat falls. Share how falls have impacted the life of you or someone you care about, helping to create a #CultureOfFallPrevention, and SafelyYou will donate to the Alzheimer's Association®, helping to support care and research. SafelyYou makes it possible for care staff to review video of fall events, giving a voice to those living with Alzheimer’s and advocating for them when they can’t advocate for themselves. Our passionate mission is to elevate dementia care and donations to the Alzheimer’s Association are just one of the many ways we seek to serve our mission. Thank you for taking part in Falls Prevention Awareness month with us. You can turn your story into support for Alzheimer’s care and research here: 👉 https://hubs.ly/Q022BBhT0 #ShareYourStory #FallsPreventionAwareness #FallPrevention #SeniorLiving

There is so much progress yet to be made into researching treatments for rare diseases. Learn more on #RareDiseaseDay, February 29, the rarest day of the year. This year, I am running the Chicago Marathon and fundraising for Angelman Syndrome Foundation. I am running for Isla who was diagnosed with Angelman Syndrome, a rare neuro-genetic disorder that occurs in one in 15,000 live births or 500,000 people worldwide: https://lnkd.in/eYu4vVEt

On May 19th, I'll be walking 35km to support those affected by mitochondrial disease (mito). 35km in one walk may seem daunting but that's nothing compared to the hurdles that families affected with mito have to overcome. When I think about Noah and his family's journey, it's a reminder of the resilience and strength within us all. Read more about Noah's story here - https://lnkd.in/gJnWr-mV Mitochondrial disease affects people all over the world, presenting relentless challenges that impact every aspect of daily life. That's why I'm teaming up with BPM Health Hampton to raise funds and awareness for the Mito Foundation. Here's how you can join the fight: 1️⃣ Donate: Your contribution, no matter the size, plays a crucial role in funding research for treatments and ultimately finding a cure. https://lnkd.in/g2rKaJM9 2️⃣ Spread the Word: Share this post to raise awareness about mito and encourage others to get involved. 3️⃣ Get Involved: Whether it's participating in the walk, volunteering, or sponsoring, every action counts in our mission to support the Mito Foundation. Let's walk together towards a future where mitochondrial disease no longer poses a threat. Your support means everything to Noah, his family, and countless others fighting mito. #MitochondrialDisease #CureMito #MitoFoundation #TheBloodyLongWalk