At the 2024 Round Table conference, we asked doctors what they think will be the greatest advancement for NMO in the next 5 years. Here’s what they had to say.💚 https://lnkd.in/gsYHmZkV
The Guthy-Jackson Charitable Foundation
Non-profit Organizations
Beverly Hills, California 657 followers
Through research, technology and collaboration, we make medical breakthroughs for those with NMOSD. Next up: CURES.
About us
The Guthy-Jackson Charitable Foundation is dedicated to funding research in the quest to understand the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disorder. Our Foundation is passionate in its support of programs and opportunities aimed at elevating the clinical paradigm for NMO patients and improving options for treatment, prevention, and an eventual cure for this disease. We have invested over $80,000,000 into research.
- Website
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https://guthyjacksonfoundation.org/
External link for The Guthy-Jackson Charitable Foundation
- Industry
- Non-profit Organizations
- Company size
- 2-10 employees
- Headquarters
- Beverly Hills, California
- Type
- Nonprofit
- Founded
- 2008
- Specialties
- Neuromyelitis Optica Research, International Research Collaboration, Biosamples Collection & Storage, Medical Health Data Collection & Storage, Research Funding, Philanthropy, Family Foundation, Southern California, Patient Advocacy, Neuromyelitis Optica, NMOSD, NMO, and Patient and Care Partner Perspectives
Locations
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Primary
Get directions
PO Box 15185
Beverly Hills, California 90210, US
Employees at The Guthy-Jackson Charitable Foundation
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Megan Behne
Manager, Research Relations and Contracts at The Guthy-Jackson Charitable Foundation
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Victoria Jackson
Philanthropist and Beauty Industry Pioneer
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Monica Jones
Self motivated individual advocating for patients rights
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Cori Woolf
Co-Director of Patient Advocacy at The Guthy-Jackson Foundation and Finance Admin at Playaway Products LLC
Updates
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The Guthy-Jackson Charitable Foundation reposted this
💡 Stay Informed with Patients Rising! 💡 Want to stay updated on the latest in healthcare policy, patient advocacy, and the work we’re doing to empower patients and caregivers across the country? Follow our LinkedIn page for real-time updates, thought leadership, and opportunities to get involved in shaping the future of healthcare! ✅ Hit that follow button to be the first to know about our advocacy efforts, patient stories, and much more. Let’s make healthcare work for patients, together! #PatientsRising #PatientsRisingFam #HealthcareAdvocacy #PatientEmpowerment #FollowUs
Patients Rising | LinkedIn
linkedin.com
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The Guthy-Jackson Charitable Foundation reposted this
💡 Take some time this weekend to explore what ECTRIMS Patient Community Day has to offer and share it with your patient community. Full details here 🔗 https://bit.ly/3SQkJYR On 20 September, patients will have the opportunity to take part in ECTRIMS Patient Community Day, a FREE event where they can discover the latest research breakthroughs, participate in expert-led discussions, and have their questions answered in our interactive Q&A sessions. Translations in 50+ languages are available. 📅 20 September 2024 🕒 15:00–18:00 CEST 📍 Bella Center Copenhagen, Denmark & ONLINE 🔗 Sign up: https://bit.ly/3SQkJYR Join us in spreading awareness and helping patients access the latest information on current research advancements in #MS, #MOGAD, #NMOSD, and other neurological conditions. #ECTRIMS4me #ECTRIMSPatientCommunityDay
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The Guthy-Jackson Charitable Foundation reposted this
⏰ Less than a month until we gather in Copenhagen and online for #ECTRIMS2024! Join us in celebrating the 40th anniversary of ECTRIMS. This year's congress is not just a milestone—it's a commitment to continue the fight for those living with #MS and related neurological conditions. We invite you to join us in our dedication to supporting physicians, researchers, and everyone affected by MS. Let’s continue making strides together. 🔗 Register today: https://bit.ly/42L7Z9g #MSResearch #Neurology
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The Guthy-Jackson Charitable Foundation reposted this
Reminder! ⏰ Our virtual coaching series with Can Do MS begins TOMORROW! Sign up to learn how communication impacts relationships, navigating role changes, and more. #rareneuroimmunedisorders #coaching https://lnkd.in/gjMMm_uh
It's back! We are excited to announce that we are once again partnering with our friends at Can Do MS to bring you another virtual 4-part coaching series on relationships and communication. Adults who have been diagnosed with a rare neuroimmune disorder (#ADEM, #AFM, #MOGAD, #NMOSD, #ON and #TM), parents, care partners and loved ones are invited to join this coaching series. Come together with other community members, peers and experts to share, learn, and make positive changes relative to navigating our relationships and communications while living with a rare neuroimmune disorder diagnosis. The first session will be held on Tuesday, August 6, 2024. Learn more about the series, view the full schedule, and register today at https://srna.ngo/coaching.
Coaching Series on Relationships and Communication
https://wearesrna.org
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The Guthy-Jackson Charitable Foundation reposted this
🗣️In this Peer Exchange episode, a panel of experts discussed how the design, programmability, and safety features of intrathecal baclofen pumps have changed over time. 🕰️ 📺 Watch Now: https://lnkd.in/eVjwtZSh
Baclofen Pump for Treatment of Severe Spasticity
neurologylive.com
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The Guthy-Jackson Charitable Foundation reposted this
“Knowledge is power, and understanding your condition provides invaluable insight into the approach to care. SRNA’s micro-learning courses will hopefully give patients and families around the world access to information that will empower them to chart an effective treatment plan.” — Dr. Benjamin Greenberg, UT Southwestern Medical Center Are you treating someone with a #rareneuroimmunedisorder? Share our free micro-learning courses with them to help answer their questions and guide their care. Learn more at https://srna.ngo/courses.
Online Learning
https://wearesrna.org
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⭐ Read more in the latest article from Manuela Callari, featuring tips on supporting the hashtag #MentalHealth of the hashtag #RareDiseaseCommunity from Albert Freedman, PhD, the psychologist behind Rare Counseling: https://lnkd.in/effZhrPr
Frank Rivera was living in Florida with his wife in 2004. One day, while out for a run, he had trouble breathing and went to the hospital. “They took an x-ray and found masses in my lungs,” he recalled at the World Orphan Drug Congress USA (#WODC24). Initially diagnosed with lung cancer after a biopsy, Rivera underwent treatment. However, another x-ray revealed lumps in his lungs, and this time, the biopsy diagnosed him with #sarcoidosis, a rare condition causing the immune system to overreact and form granulomas, especially in the lungs and lymph nodes. “I went through 4 years of chemo and radiation for a disease I never had,” Rivera said. “That really affected my mental health.” Now the president of Stronger Than Sarcoidosis, Rivera began treatment for the rare disease. But in 2015, doctors ran out of treatment options. “I was in a lot of pain. I thought about committing suicide. I had it all planned out,” Rivera said. People with rare disorders have a lower quality of life in all domains compared to the general population and those with common chronic diseases such as hypertension, arthritis, and asthma. They experience higher levels of anxiety, depression, and fatigue, and lower social engagement. ⭐ Read more in the latest article from Manuela Callari, featuring tips on supporting the #MentalHealth of the #RareDiseaseCommunity from Albert Freedman, PhD, the psychologist behind Rare Counseling: https://lnkd.in/effZhrPr #RDAatWODC #MentalHealth #RareDisease
How to Support the Mental Health of Patients With a Rare Disease
https://www.rarediseaseadvisor.com