Northwell Health Foundation’s Post

Help us save lives before disease strikes by focusing on prevention! Support our #G2PRunning4Research team. Your small donation makes a big difference. 💙 Click the link to meet our dedicated runners and learn why they’re running to advance genetics and preventive genomics research—critical for the future of healthcare. Genomics helps mitigate the impact of diseases, reducing healthcare costs and improving long-term outcomes. Every dollar counts. 🙌 📍 Boston, Massachusetts. 🗓 23 June, 24. Your support fuels precision medicine advancements, offering hope and saving lives: https://lnkd.in/gFZ3grwr #Genomes2People #10kMarathon #Boston #BostonMarathon #Research #HealthResearch #TranslationalResearch #Science #ScientificResearch #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 #PopulationHealth #PreventiveHealthcare #PersonalizedHealthcare #HealthcareInnovation #Medicine #PrecisionMedicine #PreventiveMedicine #PreventativeMedicine #PersonalizedMedicine #GenomicMedicine #BioMedicine #Biology #Biotechnology #Biomedical #HealthSciences #HealthCommunication #ScienceCommunication #SciComm #Philanthropy #GoodCause

💙 ⭐ #G2PRunning4Research (Meet Our Captain): Janelle Shea, Genetic Counselor and Project Manager. Curious about what motivates our team captain? Find out why she is running for Genomes2People this year! 👇 🏃♀️ "Genomes2People #Running4Research team combines two of my favorite things- running and research! I am running to support our research so that in the future, everyone will have access to preventive genomics to prevent disease before it starts, helping people live longer and healthier lives." In the picture: Our team captain, Janelle Shea (L) & friend Brendan McAuliffe (R). Please know that your donation will make a significant impact and will be instrumental in shaping the future of research: https://lnkd.in/gFZ3grwr #Genomes2People #10kMarathon #Boston #BostonMarathon #Research #HealthResearch #TranslationalResearch #Science #ScientificResearch #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

💙 #G2PRunning4Research: (Meet Our Runner & Friend): Brendan McAuliffe is a supporter and friend of Genomes2People through association. He is running in the B.A.A. 10K, presented by Brigham and Women's Hospital on June 23rd, to support the #G2PRunning4Research team. Read why some of our friends like Brendan are running to fundraise for our aim of preventive over cure! 👇 🏃♂️ "I am happy to run for Genomes2People because of the important research they are doing! Their work in preventive genomics empowers individuals to make informed decisions about their health!" Your donation will empower our runners and help us achieve our goal of making prevention over cure a reality through genomics. By supporting our efforts, you are investing in preventive genomic research that leverages the power of personalized medicine to prevent diseases before they occur: https://lnkd.in/gFZ3grwr In the picture: Brendan McAuliffe (L) and our team captain Janelle Shea (R). #Genomes2People #10kMarathon #Boston #BostonMarathon #Research #HealthResearch #TranslationalResearch #Science #ScientificResearch #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

This year, leap day is a day of alignment, discovery, and Inn-volvement. In addition to getting people’s calendars in sync with the Earth’s orbit, February 29 is Rare Disease Day at NIH, and The Children’s Inn at NIH will have a table at a special event. The event is chance for the public to learn more about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. Rare Disease Day at NIH is free and open to the public; one can attend in person or online. Learn more and register at https://lnkd.in/eJeEyptH. Stop by the inn’s table and hear about how the inn provides support and a comfortable place to stay (at no charge) to families during times of unimaginable need while also helping to advance cutting-edge treatments, diversify clinical trials, and unlock discoveries that move medicine forward. These efforts are already expansive and are now expanding to allow the inn to offer more space and services to more families. See this Washington Business Journal article for information: https://lnkd.in/eqfRyB2d. Whether I’m working as a board member, on art projects with the children, or in the kitchen to help prepare home-cooked meals, I have received rewards beyond measure. And you can, too. The need to reset and connect is persistent. Unlike our calendars, we shouldn’t wait to catch up. It’s time to leap, learn, and get Inn-volved with The Children’s Inn at NIH! (https://lnkd.in/eE4FCqXM) #RDDNIH #APlaceLikeHome #NIH

Second appointment with the PROMS Plenary Recap series to help you catch up on the latest results and discussions that took place during the Plenary Event in Baveno on November 8th.  The second session “Valuing the experiential knowledge of people living with the diseases” was moderated by Prof. Mario Alberto Battaglia (AISM ). The session included:   ➡ Giampaolo Brichetto as Researcher (PROMS Survey) – Italian MS Society, PROMS WG1; ➡ Susanna V. for Patient Perspective on Survey – Engagement Coordination Team representative; ➡ Patricia Moghames as EMSP - European Multiple Sclerosis Platform Representative (IMSS Survey);  ➡ Paul Kamudoni as Industry Representative – Merck; ➡ Maria Pia Sormani as Speaker on clinical trials and PROMs  – Università degli Studi di Genova; Some highlight(s) from the session: 📊 To select or design meaningful measures, PROMS needs to continue progressing its research on domains’ interdependencies to understand what specific combination of measures should be used for each patient. However, use of specific measures will also need to be differentiated according to each unique patient’s journey (based on sociodemographic, inclusivity and progression level criteria) and through reflecting the expectations of people with the disease. Most importantly, the Initiative also needs to make sure that what matters for the person is also what truly benefits them in terms real quality of life improvements. 📈 New methods for quantifying treatment effects that consider multiple outcomes and patient’ preferences are needed, as in the case of the “Net chance of benefit” statistical approach suitable to a more “patient oriented” evaluation of treatment effects and outcomes, since different patients can have different priorities. 🔎 There is also a need for collaborations of PROs validation among different initiatives and research projects, thus avoiding the proliferation of several instruments and encouraging open sharing of data. A strong example may be the acquisition of comprehensive data through combining the PREMs from IMMS Survey (EMSP) and the measures identified through the PROMS Initiative’s survey.  Watch the full session here: ➡ https://lnkd.in/dwD_dFAp

We proudly present you our new AHA BOOST project entitled: Arm-hand BOOST therapy to enhance recovery after stroke: clinical, health economic and process evaluation. 💪   🎯The overall aim of this project is to improve outcomes for patients who have experienced a stroke and are admitted to inpatient stroke rehabilitation. These patients have the potential to relearn. The effects of a comprehensive arm-hand therapy (Aha BOOST) will be compared to the effects of a dose-matched therapy for the lower limbs. The aim is to demonstrate an improvement beyond the current level of recovery, both in the short and long term. To show a favorable impact on health, the economy, and quality of life, with implications for both the patient and society. And additionally, to evaluate the implementation process for further dissemination and utilization.   Aha Boost is funded by the Research Foundation Flanders - FWO (2023-2027) and is a collaboration between KU Leuven, Vrije Universiteit Brussel, and Jessa Ziekenhuis. Research team: Geert Verheyden, Sarah Meyer, Liesel Cornelis, Koen Putman, Maaike Fobelets, Ann De Smedt, Lisa Cruycke, Marc Michielsen and Maaiken Vander Plaetse. 📢 Stay tuned for more! 

Ophthopedia Update:Reply: We thank Drs Elhusseiny, Grigorian, and Sallam for their interest in our study and for the opportunity to address the main topics of their commentary. First, we thank the authors for bringing the publication by Conner et al1 to our attention. The reference was omitted from our work due to timing. Our work was in preparation while that work was being published. The work by Conner et al1 adds to the growing literature demonstrating the efficacy of the use of oral fluorescein ingestion to delineate retinal disease processes in the pediatric population. #Ophthalmology #Retina #Ophthotwitter

ADCY5.org was one of the first #RareDisease communities to have a stem cell line, thanks to California Institute for Regenerative Medicine (CIRM). It did more than provide cells with no IP reachback, it gave us credibility as a Patient Advocacy Organization, leading to research helping us identify a compound. The compound relieves the most debilitating symptoms for children and adults affected by ADCY5-related movement disorder. The compound was discovered by patients, it was confirmed by research. ADCY5.org is a California based, patient-led community, leading research, benefiting from CIRM. We are one of many in #California making strides to help patients, lower healthcare costs for the healthcare system, and help patients lead productive and happier lives. https://lnkd.in/ga6by24 CA residents, please read and sign the petition, letting CIRM know Rare Disease research affects many and multiplies into common diseases. https://lnkd.in/gHTEa-Ma

💙 💻 #G2PRunning4Research: (Meet Our Supporter & Virtual Runner): Our social media manager, Pakhi Dixit, may not lace up her running shoes for the B.A.A. 10K, but her support for the Genomes2People #Running4Research team runs deep. 👇 🎽 "I believe in the transformative power of personalized medicine, recognizing that tailored healthcare solutions are far more effective than one-size-fits-all approaches. Understanding genetics' role in health, I see the value in genomic research, which offers comprehensive insights into individual bodies and enables proactive measures to prevent future ailments. My backing underscores a commitment to advancing healthcare through innovation and precision, paving the way for a healthier tomorrow." Meet our dedicated runners, Janelle Shea, Erin Drake, José Manuel González de Aledo Castillo, Haley Leishman, and Brendan McAuliffe, whose efforts can be bolstered by your donation. Even a modest contribution, such as $10, significantly impacts. Every dollar counts towards supporting our cause: https://lnkd.in/gFZ3grwr #Genomes2People #10kMarathon #Boston #BostonMarathon #Research #HealthResearch #TranslationalResearch #Science #ScientificResearch #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

Rare Updates! The new UK government has quickly prioritised patient access and NHS performance by announcing an independent review led by Lord Darzi to inform a new 10-year health plan.    So this weeks' Westminster Forum Projects event which gathered experts from across the UK to discuss rare disease services, with input on improving diagnosis, care and treatment for rare patients, was timely and relevant given the increased healthcare focus.    I joined an expert panel on research and innovation for rare diseases with Catriona Crombie, Victoria A Lund, Professor Simon Johnson and Lucy Allen. We highlighted the UK’s strong research and clinical skills in rare diseases and how they can be used to boost discovery and innovation for patients and attract more research and development investment.    There has been progress in increasing awareness and attention for rare diseases in recent years. This needs to continue as outlined in the UK Rare Disease Framework to achieve health equality for rare patients and build on the UK’s strengths in this area. Paul Clift Lucy McKay Derralynn Hughes; Paramala Santosh Ana Lisa Tavares #RareDiseases #HealthEquity #Alexion #whfevents