Hilary Evans-Newton’s Post

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

Ride to Make a Difference for Alzheimer's - One Mile at a Time! 🚴♀️ A great endeavour Lloyd Rogers is undertaking this August to raise awareness and support for #alzheimers. With a challenging goal of riding over 300 miles, each mile is an opportunity for change. Did you know? In the UK alone, there are approximately 900,000 individuals living with dementia, a number projected to surge to 1.6 million by 2040. Shockingly, 209,600 new cases of dementia are expected this year, equating to one diagnosis every three minutes. Your contributions, regardless of their size, can play a pivotal role in driving progress. By donating, you directly contribute to critical research, support programs, and resources dedicated to Alzheimer's. ❤️ Donate Now: https://lnkd.in/dY46Vdrr Keep track of his progress: https://lnkd.in/dBGeNdAR Your involvement and sharing within your network can spark a wave of awareness and generate essential funds. Support this initiative to build a world where Alzheimer's is better understood, managed, and, ultimately, prevented. Each donation and every share counts more than you can imagine. For updates on this incredible ride, click the link above. GI rec Ltd - The GI Recruitment Specialists! The Ground Investigation Podcast #groundinvestigations #groundengineering #drilling

Whether or not you find a creative execution effective is always objective. That's why there's no universal response to Alzheimer's Research UK new advert. Two of my grandparents died with dementia and like many people my age, I've got an ever-increasing number of friends going through what are incredible emotional, practical and financial challenges without anywhere near the right level of services available. I've also worked for several caring and dementia charities. Personally, I don't like it. Sure, it tugged on my heartstrings in all the right places but that's not enough. Personally, what I want from a research charity aiming to find a cure is a very clear picture of how they're going to do it. Personally, I think wrapping up an incredibly urgent issue in metaphors and analogies does feel old school (as does the animation - and I don't know if that was on purpose or they didn't have the budget for ILM) and leaves me with more questions than any sense of practical progress. For me, Cancer Research UK's latest 30 second spot perfectly balances authenticity, emotional power and evidence-based progress: https://lnkd.in/eMGCVx8j Personally, that's how I feel. But what about you? #charity #alzheimers #dementia #branding #advertising

🧔✂️ A Small Act for a Big Fight For nearly 20 years, my beard has been as much a part of my identity as the values I stand for. However, this week, in a heartfelt moment, I decided to shave it off. This act isn't about a change in style but a deep expression of solidarity with one of my closest friends who is bravely fighting against ALS (Amyotrophic Lateral Sclerosis). ALS is a devastating illness that challenges every aspect of life, not only for those diagnosed but also for their families and friends. Recently, my friend made the tough decision to shave his beard, a feature as defining as his incredible spirit, due to the progression of ALS. In support of him and to raise awareness, I've removed my own beard. It's a small gesture, but it represents my commitment to standing by him and everyone battling ALS. I'm reaching out to my network today not just to share this personal moment but to encourage each of you to join me in the fight against ALS. Donations to ALS research are crucial. They fund the scientific endeavors that seek effective treatments and, hopefully, a cure. Every contribution, no matter the size, helps. Please consider donating to, Deutsche Gesellschaft für Muskelkranke e.V. (https://lnkd.in/e_Q8-qDc), ALS Association (https://www.als.org/)or any organization dedicated to ALS research and patient support. Let's show that together, we can make a real difference. Together, we are stronger. 💪🧡 #ALS #FightALS #Solidarity #MakeADifference #Donate #GegenALS #Solidarität #BewirkenWirEtwas #Spenden

A peak into my personal life to share with my professional community something that means so much to me. I'm so proud to share that I've been asked to be a champion for The Magnificent - a 10 week fundraising competition for The Cystic Fibrosis Foundation with #TeamLuke. Please take a look at why this cause is so incredibly important to me and consider supporting me doing all I can for my buddy Luke. https://lnkd.in/gB5aaUQK Facts about CF: -CF is a rare, incurable condition that causes an array of attacks on various organs. As a result, anyone with CF has to undergo a variety of daily therapies to battle the effects of this deadly condition. -The life expectancy of someone with CF 30 years ago, was age 30. Because of funding towards research and medical advancements, today many are living to age 50. -Lung transplants used to be expected for someone with CF, the need for these has decreased in the modern day population thanks to all the progression of the science and treatment modalities. -There are only 44,000 cases of CF in the United States which is why donations to this cause are crucial.

Misophonia International is proud to join the upcoming nonprofit The International Misophonia Foundation. As of September 1st, 2023, Misophonia International will now be operating as an extension of the IMF. We are excited to be on this journey for a better understanding of Misophonia for the public and research/clinical community. The International Misophonia foundation is dedicated to improving research, access to resources and awareness of Misophonia, newly recognized neurophysiological disorder that impacts quality of life of sufferers. The purposes of this non-profit are as follows: To provide funding end help initiate research for misophonia To engage in public advocacy campaigns and promote awareness for misophonia, and teach the public, clinicians, and sufferers, about the disorder To provide resources for clinicians, researchers, and the public on misophonia To facilitate research for misophonia through the development of a research journal To [Read More] https://lnkd.in/eBFjyFYb

Walk for Endo 2024: 8,000 Steps a Day for Awareness and Change This July, I will be joining the Walk for Endo 2024 challenge - a fundraiser dedicated to raising awareness and support for endometriosis, a chronic condition that affects 1 in 10 women. As someone who has been affected by this condition and waited ten long years for a diagnosis, I am committed to making a difference by walking 8,000 steps every day throughout the month of July. I am passionate about bringing visibility to endometriosis and advocating for better research, understanding and treatment. Endometriosis causes chronic pain, infertility, and a range of debilitating symptoms. Despite its prevalence, it remains poorly understood and often misdiagnosed. This fundraiser is an opportunity to shed light on the struggles faced by those with endometriosis, support crucial research, and foster a supportive community within our workplaces and beyond. Walking 8,000 steps daily symbolizes the avarage time it takes to receive a diagnosis in the UK, as well as the persistent effort and resilience required to manage endometriosis. It's a personal challenge that represents the journey many individuals face. By taking these steps, we not only promote our own health but also take a stand for those who struggle to find answers and relief. How You Can Help? Donate: I have set myself an ambitious goal of raising £1,000 for Endometriosis UK. Contributions will go directly to the organization to fund endometriosis research, education, and support services. Every amount helps to fund crucial initiatives and improve the lives of those affected. You can donate via this link: https://lnkd.in/eW6-rpXS. Spread the Word: Help raise awareness by sharing my story and the mission of Walk for Endo 2024 with your network. Use #WalkForEndo2024 to connect with others and amplify our message. Join the Walk: You can also commit to walking 8,000 steps each day in July. Whether you're a co-worker, friend, or supporter of someone who has been affected by endometriosis, your participation is invaluable. Endometriosis is not just a personal battle; it's a workplace issue that affects productivity, attendance, and overall well-being. By participating in this fundraiser, we can foster a supportive environment and encourage our workplace to be more understanding and accommodating of those with chronic conditions. I have been extremely fortunate to work for a flexible and inclusive company - Wiley - with incredibly supportive and understanding managers (shoutout to Michael O'Riordan and Amanda Wilson). For more information, please visit https://lnkd.in/e97BHe6n. Together, we can stride towards a future with better understanding and treatment for those living with endometriosis.

Throughout the month of November, VibeTech is supporting this year's Movember4PD Challenge to help raise awareness and funding for The Michael J. Fox Foundation for Parkinson's Research. Join Team VibeTech and make a contribution in support of The Michael J. Fox Foundation for Parkinson's Disease Research's goal of ending Parkinson's Disease for good by visiting https://lnkd.in/gfnQU9Na. More than 6 million people worldwide are living with Parkinson’s, which is the second most common neurological disorder. In the United States, approximately 60,000 new cases will be diagnosed this year alone. Currently, there is no known cure for Parkinson’s. As the world’s largest nonprofit funder of PD research, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and ensuring the development of improved therapies for those living with Parkinson's today. When giving through the VibeTech team page, 100 percent of the donation will go straight to The Michael J. Fox Foundation research efforts to speed a cure for Parkinson's disease and improve the lives of those living with Parkinson's today. www.Michaeljfox.org #VibeTech #movember4pd #parkinsons #vibetech3

Throughout the month of November, VibeTech is supporting this year's Movember4PD Challenge to help raise awareness and funding for The Michael J. Fox Foundation for Parkinson's Research. Join Team VibeTech and make a contribution in support of The Michael J. Fox Foundation for Parkinson's Disease Research's goal of ending Parkinson's Disease for good by visiting https://lnkd.in/gF7JtViW. More than 6 million people worldwide are living with Parkinson’s, which is the second most common neurological disorder. In the United States, approximately 60,000 new cases will be diagnosed this year alone. Currently, there is no known cure for Parkinson’s. As the world’s largest nonprofit funder of PD research, The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson's disease through an aggressively funded research agenda and ensuring the development of improved therapies for those living with Parkinson's today. When giving through the VibeTech team page, 100 percent of the donation will go straight to The Michael J. Fox Foundation research efforts to speed a cure for Parkinson's disease and improve the lives of those living with Parkinson's today. www.Michaeljfox.org #VibeTech #movember4pd #parkinsons #vibetech3

Early detection is key. Please familiarize yourself with the Ten Early Signs of Alzheimer's and Dementia -- https://lnkd.in/gE_C7DKE -- it could make all the difference in the world. #alzheimersinamerica