Timothy Syndrome Alliance’s Post

What a huge move leading the next era at the newly named Stanford Mussallem Center for Biodesign. Here’s to the most noble mission to advance health outcomes and equity through innovation education, translation, and policy.

This is Multiple Sclerosis (MS) Awareness Week, and it is a dedicated period aimed at raising awareness about multiple sclerosis, a chronic autoimmune condition that affects the central nervous system. Over 130,000 people are affected by MS in the UK and each year nearly 7,000 people are newly diagnosed. Celebrating MS Awareness Week is crucial to help increase understanding and knowledge about MS within communities, reducing stigma and misconceptions surrounding the condition. Secondly, it provides an opportunity to highlight the importance of research into MS, as well as advancements in treatment and care. Increased awareness often translates into more funding and resources allocated towards research efforts aimed at finding a cure or more effective treatments for MS. And finally, MS Awareness Week serves as a platform for individuals living with MS to share their experiences, connect with others facing similar challenges, and advocate for improved access to healthcare, employment opportunities, and other support services. Celebrating MS Awareness Week is not just about raising awareness—it's about empowering individuals affected by MS, fostering understanding and support within communities, and driving positive change towards a world where everyone living with MS can lead full and fulfilling lives. Famous people living with MS include: Christina Applegate, Jack Osbourne, Jamie-Lynn Sigler and Selma Blair, to name a few, but it can affect anyone. If you want to learn more, check out https://lnkd.in/epUhmzMz and get involved #MultipleSclerosis #LearnMore #NervousSystem #AutoImmune #Brain #SpinalCord #BlurredVision #InclusionMatters #Balance #Learn #MSSociety

For #PhilanthropyThursday we are highlighting Veterans Health Foundation For more than 90 years, VA clinicians have been improving the lives of Veterans and all Americans through health care discovery and innovation. VA Research is unique because of its focus on health and wellness issues that affect Veterans. Nested within the Veterans Health Administration—the nation’s largest health care system—VA Research is viewed by many experts as a model for rigorous, impactful research. Veterans Health Foundation and their partners have been able to bring fund 283 research projects, 5710 surgeries, 80 transplants, and more. Today especially, supporting veteran charities fosters a sense of patriotism and community. It encourages people to reflect on the true meaning of the holiday and the values of freedom, sacrifice, and unity. This can lead to a stronger, more connected community! Donating to veteran charities helps raise awareness about the ongoing needs of veterans. Many people are not fully aware of the struggles that veterans face after their service. By supporting charities like Veterans Health Foundation, we can help bring these issues to light and promote broader support and understanding. Read more about this awesome organization here: https://lnkd.in/gRFzmvnr

I am well and truly chuffed to announce that the second paper of my PhD has now been published in The Journal of Health Psychology. This research would simply not have been possible without the immense collective efforts of my co-authors and supervisors, Rachel Thorpe, Barbara Masser, and Fiona Kate Barlow. In this paper, we explore how Australian blood donors perceive and develop psychological ownership (or a perceived sense of ownership) over their blood donation experience through semi-structured interviews. A key insight from our research is that psychological ownership appears to be closely linked to donors' sense of control and ability to personalise their donation experience. https://lnkd.in/g-4cfvxg 

💙 #G2PRunning4Research (Meet Our Runner): Lily Hamilton, our new undergraduate summer research trainee, has joined the Genomes2People Running4Research team to help fundraise our preventive genomics research. Read more about why she is passionate about supporting our fundraising efforts here. 👇 "I'm running for Genomes2People because I'm grateful to be a part of such an exciting research project, and I want to help support the amazing Genomes2People team and the mission of this project. Your support means so much because it helps the Genomes2People team work towards a future where genomics and precision medicine are used to save many lives!" Support Lily's run and help us advance our research by making a donation today - every contribution, no matter how small, can make a significant impact! https://lnkd.in/gFZ3grwr #Genomes2People #G2P #G2PTrainees #G2PTeam #10kMarathon #Boston #BostonMarathon #BAA10K #Research #HealthResearch #Fundraising #TranslationalResearch #Science #ScientificResearch #RunningForResearch #TranslationalScience #Genetics #DNA #Genes #PreventiveGenetics #GeneticResearch #Genome #Genomes #Genomics #PreventiveGenomics #TranslationalGenomics #GeneticTesting #GeneticCounseling #GeneticCounselors #Geneticists #MedicalGeneticists #Screening #Sequencing #NewbornSequencing #DNASequencing #WholeGenomeSequencing #Health #PrecisionHealth #PublicHealth #NewbornHealth #ChildrenHealth #PreventiveHealth #PreventativeHealth #PersonalizedHealth #HealthForAll #HealthEquity #EvidenceBasedMedicine #HealthOutcomes #Healthcare #PreventiveHealthcare #PersonalizedHealthcare #HealthcareInnovation #Medicine #EquitableMedicine #PrecisionMedicine #PreventiveMedicine #PreventativeMedicine #PersonalizedMedicine #GenomicMedicine #BioMedicine #Biology #Biotechnology #Biomedical #HealthSciences #HealthCommunication #ScienceCommunication #SciComm #Philanthropy #GoodCause

Excited to announce that this fall, I'll be taking an academic leave of absence from my ophthalmology residency to pursue a Master's degree in Public and Global Eye Health at the London School of Hygiene and Tropical Medicine, U. of London! As the first Israeli candidate in this prestigious program, I aim to gain the advanced education, training, and research opportunities needed to develop initiatives and partnerships that will significantly improve eye care services in Israel and worldwide. "Vision impairment affects 2.2 billion people globally, with 1.1 billion untreated in 2020—expected to rise to 1.8 billion by 2050. This causes severe economic implications, with an estimated productivity loss of 411 billion US dollars, nearly twice New Zealand's GDP. Poor eye health impedes learning, work, caregiving, and can lower life expectancy, but up to 90% of cases can be prevented or treated cost-effectively." Please support me in raising funds to attend this transformative program and join me in making a difference. Together, let's tackle the global burden of vision impairment and improve the quality of life for millions! https://gofund.me/1560aa6b

Check out this webinar to learn more about the NIH SEED fund, tomorrow, July 31 at 1 PM EST.

Wearing my Parkinson’s ‘hat’, or I’d rather say #EUPATIFellow I am pleased, and a little nervous, to be chairing a webinar organised by the MRC about ‘Public Partnership in Lab Based Research’. With patient involvement, engagement, co-creation, PPI etc often aspired to be placed at the center of research, this webinar will share some examples and discuss some of the difficulties and benefits of partnerships. The webinar if free and starts at 13:00 until 14:30. Follow the zoom link below to register. #DRIG, #MRCPPU, #parkinsons, #PFMD, #PFOF, #PPI, #patientengagement

Did you know, #OperationSmile is currently carrrying out medical research to find out what causes #cleft conditions? This project, known as the International Family Study (IFS), is led by our academic partners at the University of Southern California and Children’s Hospital Los Angeles (CHLA). With the knowledge gained from research, we can influence global health systems and health policy as well as improve care for our patients. Read more about this work here https://loom.ly/4JKMO6I

Results from "The Final 10%" CF Survey reveal many people have participated in clinical trials in the past and even more are interested in participating in the future. We were particularly moved by 66% of respondents citing the “desire to help the CF community even without a direct benefit” as a main motivation. Talk about altruism! Forever inspired by the courage and solidarity of the amazing #cysticfibrosis community 🙌🏼 Read the full report >> https://bit.ly/3IBwJYf #raredisease #CFresearch #clinicaltrials