We are truly grateful for the opportunity to host Dr. Mike Marciello this week. His story about developing Stargardt disease later in life, adjusting to progressive vision loss, and actively supporting the community is a strong testament to the idea that anything is possible with determination. Thanks, Mike, for being an inspiration.
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Please take the time to learn more about HD. it's personal
Next week brings a first for the Huntington’s Disease Association, we’re launching our first co-produced film. Created by HDYV for young people, the group looked at what they needed when first finding out about Huntington’s disease and how to show other young people that they’re not alone. Take a sneak peek at the snippet below The Saltways
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Being diagnosed with Parkison’s disease can lead to a lot of uncertainty about the future. On the latest episode of Unlocking Strength Within, Dr. Nicole Reidy spoke about coping with the uncertainty of Parkinson’s disease and how to navigate your PD journey with empathy for yourself and others. To learn more about ambiguous loss, watch the latest episode of Unlocking Strength Within at https://lnkd.in/eXuW7V3S #AmbiguousLoss #Parkinsons #Webinar
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These are exactly the kinds of insights we value here at Sommer Consulting! 👏🏽 Listen to our new Senior Director of Strategic Partnerships, Tina Aswani-Omprakash, MPH, share her thoughts on the importance of patient insights in #raredisease research! 🎊
The Insighters® team is excited to usher in Rare Disease Month! 🦓💖 We will be featuring a series of rare disease advocates this month and kick off with our very own Tina Aswani-Omprakash, MPH 🙌🏽 Join The Insighters® powered by Sommer Consulting at www.theinsighters.com and make a difference in the #raredisease space! 💥
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Keynote Speaker | #1 Best-selling Author | University of British Columbia - Clinical Associate Professor | Psilocybin Researcher | Psychiatrist | Media Expert | Co-Founder & CEO @futurereadyminds @get.sparky
Why I launched Future Ready Minds: In a world grappling with the rise of disease, disconnection, and disruption, there’s no roadmap for navigating these challenges. That’s why I founded this initiative—to provide support and guidance in shaping a brighter future.
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Psoriatic disease impacts not just individuals but also their loved ones. In this video, IFPA Ambassador Chiara shares her journey and how her family's support has been crucial in her experience. 💡 Watch the full film, 'Psoriatic Disease and the Family: Navigating Challenges Together,' to learn more about the impact of this disease on families. - https://lnkd.in/d7R-zwHN 🌍 Be a part of the change! Visit psoriasisday.org to participate in WPD 2024 and help raise awareness. #psoriaticdiseaseandfamily #WorldPsoriasisDay2024 #WPD2024 #Psoriaticdisease #psoriaticarthritis
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Motor Neuron Diseases are a group of neuro degenerative conditions that affect the voluntary control of muscle movement. However early symptoms can include: - weakness in your ankles or legs e.g. you might trip, or find it harder to climb stairs - slurred speech, which may develop into difficulty swallowing some foods - weakening of grip e.g. you might drop things, or find it hard to open jars or do up buttons - muscle cramps and twitches - weight loss e.g. your arms or leg muscles may have become thinner over time - difficulty controlling emotions e.g. crying or laughing inappropriately MND is uncommon, and while it can affect anyone, it is more common after the age of 60 years. However if you display any of the concerning symptoms above, then please consult with a doctor. CAS Medical has access to private neurologists across central Scotland, who specialise in MND. If you wish to arrange a consultation, then please email info@casmedical.org #casmedical #MND #motorneurondisease #privateGP #earlydetection
We’re deeply saddened to learn of the death of our patron Rob Burrow CBE. Rob lived with motor neurone disease in the public eye after choosing to announce his diagnosis in 2019. We will be forever grateful to Rob. Sharing his journey with this disease inspired so many people both within the MND community and the wider public. Our thoughts today are with Rob’s wife Lindsey, children Macy, Maya and Jackson, family, friends and the rugby league community.
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Please make sure you #shareyourcolours tomorrow to celebrate #rarediseaseday and #raiseawareness about #rarediseases. It's one day a year where you can spark a discussion with anyone you meet at work or outside work about #rarediseases. Do this by dressing a little but out of the ordinary, paint your face with colours, or do anything that will get people you meet or corss paths with stop and ask: "Why is your face painted/are you wearing that/ do you have lights on you? It's so important that more people know about rare diseases so that diagnoses can happen faster, funding into research is boosted and no one is left behind of feeling isolated and alone. Fine out what you can do on https://lnkd.in/e6tSUGKw #wewontrest #Imagine a world where rare diseases are not considered rare EFPIA - European Federation of Pharmaceutical Industries and Associations
Tomorrow is Rare Disease Day globally! Make sure to join the Global Chain of Lights! 🌍💡 The rare disease community will come together for Rare Disease Day to spread hope and solidarity across the world by lighting up for rare! Monuments, offices, schools and homes will be illuminated in the Rare Disease Day colours (green, blue, purple and pink) to raise awareness for the 300 million people living with a rare disease and their families. 🏛️🏢🏫🏠 Make sure to join in on 29 February, at 7 PM in your local time! . . #RareDiseaseDay #LightUpForRare #ShareYourColours #Awareness
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Leading strategic planning, impact evaluation, and organisational development to drive meaningful and measurable outcomes that will end homelessness and rebuild lives
Growing up in the North Rugby League was in my blood, I remember pestering my dad for months to let me go watch his beloved Hull FC at the Boulevard Ground. The minute I stepped in I was captivated, the rickety old turnstiles, the paint chipped from the terraces and lush green grass got me hooked - I had found my church ⛪ ! But what I loved the most was how much people loved the game, not just their own team but an admiration for up and coming talent on both sides, exceptional ball handling skills or a 40:20 kick on the last.... it was heady stuff. But the biggest love of all was that Rugby League was a community itself, part of the fabric of northern life, woven invisibly into conversations at Sunday Lunch, at the core of factory work banter or analysed kick by kick- pass by pass in the pub. As it was announced last night that the incredible Rob Burrow had passed away, it got me thinking about how Rob's journey with MND. Not only did it showcase the incredible strength of the Rugby League Community but the resilience of the man himself - his values and his approach we could all learn so much from. Love: Loving what you do, the people in your life - it matters immensely. Life is precious and far too short to filling your time with the stuff that you do not enjoy. I know it sounds simple, but be conscious in your decision making and really as yourself is this something that I love? 😍 Friendship : In life we all need allies, the people who will be part of our troop - create the space safes to be our authenticate self and keep picking us up when we are rock bottom and celebrating your success. Rob's relationship with Kevin Sinfield has been widely publicised, but only true friends would do what Kev did for Rob 💓 Taking the Path of Most Resistance 🏔: Sometimes taking the easiest route out of a problem or overcoming a challenge feels like an appealing option. But to break new ground, to achieve greatest impact the hard stuff wins. There is no doubt in my mind that Rob lived 5 years post diagnosis by not taking the easy option. Creating a Burning Platform 🔥: When Rob was diagnosed with MND he was determined with use it for a force of good, raising millions of £ to aid better research, campaigning and services for people diagnosed with Motor Neurone Disease I will certainly be keeping this in my mind when working with The Community Navigator 🗺 clients this week... So next time you feel you need to mix things up lets chat.... lets all be a little bit more Rob! Sending lots of love to the Burrow Family and the wider Rugby League Community 💙 💛
We’re deeply saddened to learn of the death of our patron Rob Burrow CBE. Rob lived with motor neurone disease in the public eye after choosing to announce his diagnosis in 2019. We will be forever grateful to Rob. Sharing his journey with this disease inspired so many people both within the MND community and the wider public. Our thoughts today are with Rob’s wife Lindsey, children Macy, Maya and Jackson, family, friends and the rugby league community.
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Help us turn up the global volume on HD awareness by posting videos, stories & photos to social media using #LetsTalkAboutHD. In the battle against Huntington’s disease no one fights alone. In the battle against Huntington’s disease no one fights alone. Together we can educate the world about the devastating impact of this disease. #HDAwarenessMonth #LetsTalkAboutHD #HDSAFamily #FamilyIsEverything #HuntingtonsDisease
Bioinformatician & Medical Dr | NEU Bioinformatics Grad | Seeking full time Bioinformatics & Data Science roles|Machine Learning & Data Mining | Omics & Survival Analysis | Python |R |SQL|Linux|RNA-Seq | WES| CAR T-Cells
3moLove the energy👏