IFPA’s Post

The 2024 Death Valley Ride to Cure ALS 🚴♂️🌵 This October, whether on two wheels or from afar, you can make an impact in the fight against ALS. The Death Valley Ride to Cure ALS is more than a cycling challenge; it's a beacon of hope, resilience, and community in the beautiful expanse of Death Valley National Park. Why Your Participation Matters? Every stride and every donation brings us closer to defeating ALS, a disease that affects thousands worldwide. Your involvement funds crucial research and support, moving us towards a cure. Event Details: - Location: Death Valley National Park, CA - Date: April 9-17, 2024 -Register: As a team or individual Can't Ride [like myself]? Your Support Still Has Power: - Donate: Direct contributions fuel ongoing ALS research and aid. - Sponsor a Rider: Boost a participant's fundraising efforts and impact. - Spread the Word: Share our mission with your network and help amplify our cause.

Today, the SBTi unveiled its latest annual monitoring report for 2023, revealing a remarkable 102% surge in approved targets compared to the previous year. Here are a few key statistics to delve into and I am happy to be part of it 😊 : ⭐ 4 205 - total companies with science-based targets validated by the SBTi by end of 2023, among them 🌱 2 125 - companies set science-based targets for the first time in 2023 🙌 83% - increase in the number of financial institutions with science-based targets 🤝 39% - of global market cap covered by businesses with science-based targets or commitments. https://lnkd.in/e_hCm3pm

This time 4 years ago, I’d recently been diagnosed with #fibroids. This time 3 years ago, I was suffering from fibroids without a plan. This time 2 years ago, I was encouraged not to live with fibroids for much longer. This time 1 year ago, I was fibroids free and had begun #TheFibroidsAgendaFund to mediate financial burdens of women’s pre-op, removal procedures, and/or post-op care. Today, 3 women (and counting) have been supported by the fund, and I have begun #CLOCHATS to continue to share survivor stories, and expand fundraising for fibroids #advocacy, #policy change, #research, and #care. #BeTheChange #WomensHistory #InRealLife #PublicHealth #BlackMaternalHealth #Awareness #Philanthropy #Healthequity #Leadership #Fundraising

https://lnkd.in/erdtaHnv please take some time to contribute to our James Lind Alliance priority setting process to help us for us ongoing efforts to improve care and outcomes for patients with decompensated cirrhosis

How is our community making progress? It's all about collaboration, activation, and hope. Throwing it back to one of the most critical parts of our origin story... In 2017 we needed help. We needed a mouse to model KAND and urgently endeavor to discover treatments. KIF1A families galvanized to create a viral call to action: #WeNeedAMouse. With each video our small but mighty community activated. To the rescue: Cat Lutz and the passionate researchers at The Jackson Laboratory answered that call with urgency and collaboration. JAX works relentlessly to drive treatments forward, but there's more. JAX is family to us. These expert scientist-advocates are all heart. Love, hope and science: that's how we keep moving forward. Today, thanks to their efforts, #WeHaveThreeMice models that are being used to understand KAND symptoms like loss of vision, and to identify hopeful therapies. Time is as much our enemy as nature, and JAX understood our urgency from day one. They answered the call when our families let the world know that #WeNeedAMouse. Thanks, JAX for working so hard and for loving all of our families. You truly are relentlessly rare. Have a look at one of our first calls to action: #WeNeedAMouse

🚀 Continuing our journey towards Real-Word Data, today I want to share the latest release from CDISC RWD standard development team: "Considerations for SDTM Implementation in Observational Studies and Real-World Data v1.0" – 28-02-2024.🚀 🔍 What's Inside? This comprehensive guide addresses the challenges of applying CDISC's SDTM to observational studies and real-world data (RWD). Key highlights: 🚀 Clarifies the goals and contexts for using SDTM in non-interventional research. 🚀 Explores specific use cases including cohort studies, case-control studies, and externally controlled trials. 🚀 Discusses common issues like adverse event reporting, medication exposure documentation, and handling demographic variables. 🚀 Provides practical strategies for resolving these issues, ensuring data is correctly formatted and compliant. 🚀 Details on conformance rules at both dataset and variable levels. 🚀 Offers guidance on handling validation checks and documenting deviations. A valuable resource for clinical data managers, biostatisticians, and anyone involved in the collection and analysis of observational study data. It provides actionable insights to enhance the accuracy and regulatory compliance of your data submissions. 📘 Explore the Full Document: The full guide, along with additional resources, can be accessed on the CDISC website. 🌟 Considerations for SDTM Implementation in Observational Studies and Real-World Data v1.0.pdf (cdisc.org) 🌟 #CDISC #SDTM #ObservationalStudies #RealWorldData #ClinicalResearch #DataStandards #ClinicalDataManagement

Have a look at HRCI - Health Research Charities Ireland's 2023 annual report! It's really interesting, I promise! It describes all the things we got up to in 2023. If you want to know what the burning issues were in Irish health research in 2023, this is the report to read.

Pro Bono in the Spotlight: Alpha-1 Europe Alliance 🌟 Highlighting our assistance to Alpha-1 Europe Alliance asbl, a collective voice representing alpha-1 antitrypsin deficiency (AATD) national patient organizations across Europe. 𝗢𝘂𝗿 𝗿𝗼𝗹𝗲: Crowell’s Frederik Van Remoortel and Camille Degrave advised the non-profit organization on the establishment of the newly formed Alpha-1 Europe Alliance, based in Belgium. 𝗪𝗵𝘆 𝗶𝘁 𝗺𝗮𝘁𝘁𝗲𝗿𝘀: The registration was completed on 17 October. This project will bring together national Alpha-1 patient organizations across Europe to advocate for improved diagnosis, care, and research. By raising awareness and sharing experiences, the patient community will improve the lives of those living with alpha-1 antitrypsin deficiency in Europe. Additionally, this involves partnering with relevant stakeholders to engage in policy discussions, foster research toward a cure, and ensure patients' involvement in research and clinical trials. 💬 “Working with Alpha-1 Europe Alliance has been a rewarding experience. This initiative not only unifies patient organizations across Europe but also amplifies their voice in crucial policy discussions. We are proud to contribute to a cause that seeks to improve diagnosis, care, and ultimately the quality of life for individuals living with alpha-1 antitrypsin deficiency.” - Camille Degrave At Crowell, we believe in using our legal expertise and human resources to make a positive impact. Public service and supporting pro bono initiatives align with our commitment to giving back to our community. For more information about Alpha-1 Europe Alliance ➡️ https://alpha1europe.org/ #ProBono #Alpha1AntitrypsinDeficiency #AATD #Alpha1 #MakingADifference

National Fentanyl Awareness Day, cont. // Naloxone is the only way to reverse a fentanyl overdose. Carry it, learn how to recognize an opioid overdose, and how to respond. Learn more at https://lnkd.in/gZguhMBj #FentanylAwareness

Multiple micronutrient supplements (#MMS) have the potential to: 🔹 Save 600,000 lives 🔹 Improve birth outcomes for 5 million babies 🔹 Prevent anaemia in 15 million women Today, the Bill & Melinda Gates Foundation, Eleanor Crook Foundation, Kirk Humanitarian and the Children's Investment Fund Foundation (CIFF)released a new investment roadmap to aid global funders in supporting country-led efforts to scale up #MMS. Read the plan here: bit.ly/4bJ5jfV #InvestInMMS #N4GParis