Joost Felius, PhD on LinkedIn: #cvi2023 #bswri #bswhealth (2024)

One week from today I will run the Edinburgh Marathon! Running 26.2 miles is never easy...which is why I chose to run this race to raise awareness and support those who live with rare disease. Have you ever taken a moment to reflect on the journey we are all on in this life, and how supporting each other gives us those moments of connection where we can build someone up and motivate them? We all have hard days and those living with a rare disease can teach us so much, which is why I get up every day and work in this space.If you would like to support NORD (National Organization for Rare Disease), 100% of the proceeds from my fundraising page go to NORD to support patients, caregivers, researchers and clinicians focused on rare disease. https://lnkd.in/eGuDCM6E #running #runningmotivation #running4rare #raredisease #rarediseases #rarediseasetrials #medicalaffairs #globalcareers #globalcommunity #globalhealth #physicians #physicianleadership

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At Open Medicine Foundation, we are committed to transforming the lives of those affected by ME/CFS, a journey that is often long, difficult, and deeply personal. Today, we share Agy's story, a powerful testament to the resilience of the human spirit and the critical need for research in the fight against chronic, complex diseases.Since 2015, Agy has battled with symptoms that defied explanation, pushing through with determination until ME/CFS made it impossible to ignore. The path to diagnosis was fraught with challenges, from being dismissed as simply depressed to undergoing costly and ineffective treatments.Before her diagnosis, Agy's life was characterized by her passion for fitness and her career as a gym manager and personal trainer. She enjoyed climbing, trekking, and riding her motorbike — a life full of activity and achievement.Today, Agy's reality is drastically different. Housebound and often confined to laying down for 22 hours a day, the disease has stripped away the joys that once fueled her vitality. Despite the daily struggle, she endures with the hope that research will soon find effective treatments.On her toughest days, hope is kindled by the dedication of OMF’s research team working tirelessly to understand ME/CFS. Agy shares, "OMF has some of the world's greatest scientists working on ME/CFS, many of whom have family members or friends with the disease. This means, unlike much of science, they are not looking for glory, to be the first to publish findings which can slow down the process considerably. They are working collaboratively, sharing research as it happens, on the fastest way to treatments, which is the number one objective."During our Triple Giving November campaign, every donation made to Open Medicine Foundation will be tripled until November 30. Your support enables us to continue vital research and inch closer to a future where no one has to endure the pain and isolation of ME/CFS. Donate today and triple your impact: https://bit.ly/49kupknJoin us in supporting Agy and the countless others waiting for answers. Together, we can make a difference.#OpenMedicineFoundation #TripleGivingNovember #MECFS #ChronicIllness #Research

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In a world where medical care accessibility varies widely, CF Vests Worldwide is making waves in bridging the gap for #CysticFibrosis (#CF) patients globally. Founded by Rod Spadinger, this nonprofit is reshaping lives through vital medical equipment redistribution.I had the privilege of speaking with Rod about his journey, the impact of CF Vests Worldwide, and ways to support this noble cause. You can read about our conversation and support the cause through the link below. https://lnkd.in/gmmezwTh

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Such an amazing collective of entrepreneurs, advisors and support. I am grateful to be a part of this eco-system. Check out the link below of our Up To The Minute Interview for Small Business Wednesdays! #smallbusiness #grateful #interview #entrepreneurs #HCCS #mommyandme #stemeducation

This is what started my advocacy for cystic fibrosis. Before we found Piper's Angels Foundation, we were doing walks to raise money for a national CF organization. But a local, grassroots organization that focuses on the social determinant of health for someone with CF stood out to us more, so we decided to pivot and started getting involved with Piper's Angels & the Crossing For CF. It was the best decision we made, we haven't looked back since! If you want to learn more about The Crossing, the video below is a short explanation of what we do and why.

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Solsken are thrilled to see the Motor Neurone Disease (MND) Association taking a proactive approach in investing in research to explore the potential connection between traumatic brain injuries (TBIs) and the risk of developing MND. This collaboration with MND Scotland and My Name’5 Doddie Foundation shows the importance of working together to find answers for those affected by these devastating conditions.The reported increased risk of neurodegenerative diseases among elite football and rugby players has raised concerns, and it's crucial to investigate whether brain injuries sustained during sports play a role in the development of MND. Professor William Stewart and his team at the University of Glasgow have taken on the important task of leading the project - Traumatic brain injury and motor neuron disease (T-MND).The use of an existing electronic health records database containing over 61 million health records is a wise approach, allowing researchers to analyse large-scale data and potentially reveal patterns and associations between TBI and MND. This investigation may pave the way for identifying risk factors and understanding the complexities of MND, enabling clinicians and researchers to develop strategies for reducing the risk of MND and improving early detection.As a care provider, Solsken witness the impact of MND on clients and their families, and any progress in understanding this complex disease is crucial. Solsken commend the MND Association for its dedication to funding vital research like this, which brings hope to those affected by MND and contributes to the ongoing fight to end this condition.The formation of the MND and Sport Expert Working Group is also a commendable initiative. By bringing together experts and stakeholders, we can gain a deeper understanding of the potential links between sports and MND, leading to better preventive measures and support for athletes.Overall, this investment in research and collaboration is a significant step forward in the battle against MND. Solsken are hopeful that this endeavor will bring about valuable insights, ultimately leading to improved care and support for individuals living with MND and their loved ones. Thank you to all the supporters who make this essential research possible; your contributions truly make a difference in the lives of those impacted by MND. Together, we can make a positive impact and work towards a future free from the burden of MND. #MNDresearch #BrainInjuryAwareness #EndMND #Solsken #complexcareproviders https://lnkd.in/gmEd2jZz

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Our ECMO initiative began when Helmsley Trustee Walter Panzirer met with Dr. Demetris Yannopoulos, the visionary behind the first #ECPR program in the United States, bringing #ECMO to cardiac arrest patients. Since then, we've expanded our ECMO support to organizations in Montana and Nevada. Why?"It became an equity issue" because of how little access rural communities have to the life-saving treatment, Panzirer recently said to Inside Philanthropy.We believe that your zip code should never determine your health outcome. We believe that ECMO needs to be included in the standard of cardiac care, and has a future role in cardiac arrest response. It is essential to fund its expansion, both beyond the walls of a hospital, as we did with Dr. Yannopoulos and the ECPR program, and to build ECMO capacity at the hospitals where rural patients come to receive care.Read more about our ECMO and cardiac initiatives in this feature from Inside Philanthropy, which you can read with a subscription here: https://bit.ly/4adBZMU

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The preprint server SportRχiv(pronounced "sport-archive"), which is run by the Society for Transparency, Openness and Replication in Kinesiology (STORK - https://lnkd.in/gtQ-9VkB) is something I have used heavily myself and have promoted for others since its inception. In fact, when I was Principal Investigator at ukactive I pushed for us to ensure all of our scholarly academic work was made openly available on completion using the SportRχivserver (see https://lnkd.in/g5tgRN_9). SportRχivcan also be used to submit work to new initiative such as Peer Community In (PCI). In fact, STORKs journal Communications in Kinesiology (https://lnkd.in/gzigDfCZ) is a PCI friendly and pre-prints submitted to SportRχivcan be recommended through PCI Health and Movement Sciences (https://lnkd.in/gzfwHqZ9), or if they are stage 1 of a Registered Report can be recommended through PCI Registered Reports (https://lnkd.in/giB5Dmkd).Aaron Caldwell has just written a lovely brief tutorial on how and why to use the service which is shared below. I'd encourage all to read it and consider making use of, and supporting SportRχiv. If you aren't a member already, then consider joining STORK (https://lnkd.in/gdE2Tpzc), or you can donate directly to support certain aspects of STORK such as SportRχiv here (https://lnkd.in/gC_Pz9fh).Full text link: https://lnkd.in/gjdeDsme

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Living with a stroke is not easy. Physically, emotionally, and mentally, it takes a toll on the entire family. But what makes it even harder is the stigma attached to it.As someone who has personally experienced this journey, I understand the challenges and the misconceptions that come with it. Society sometimes misunderstands stroke survivors, assuming they are weak or incapable or somehow left broken inside their brains forever. Even worse, many survivors have shared feeling ashamed andhave reported feeling society doesn’t care because somehow their stroke happened because “they brought it on themself”. These misconceptions becomes a real barrier that further perpetuates the stigma of stroke.Let's change that narrative!It's time to break the silence and I’m glad we started the conversation on our podcast.I’m proud that the last several episodes, including our latest conversation with Marylee and Larry of the United Stroke Alliance, that we discussed this topic.If you are a regular listener, you’ve heard this stigma mentioned in our discussions and you’ll continue to hear this resonate as well in future episodes soon to be released with stroke survivors both young and old. Stroke doesn’t discriminate and either does the stigma surrounding life after one.I hope through our work on the Know Stroke Podcast you’ll learn that strokes don’t define a person. Finally, if you know of someone who has had a stroke reach out to them and offer them a listening ear or even a smile, that alone could make a difference.The stroke community needs more hard working stroke advocates like the recent guests we had on for Episode 56 that know what making a difference feels like through the mission driven work they do! #thankyou #strokesurvivor

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Joining us later today at #Techapalooza2024 in support of CancerCare Manitoba Foundation?Here are some things to keep in mind.