You can help us make a difference to children and babies who are dying. Possible treatments are shelved. The technology and modalities exist. Don't miss our $25K matching campaign! GIVE: curegm1.org/donate #curegm1 #nevergiveup #charity #community #donate #fightforlife
Cure GM1 Foundation
非盈利组织
Albany,CA 1,005 位关注者
Action is Hope. Help Save Children and Patients Lives. Cure GM1 gangliosidosis, a fatal neurodegenerative disease.
关于我们
The CURE GM1 FOUNDATION’s mission is to fund research for the benefit of all those who suffer from GM1 gangliosidosis. The foundation has extremely minimal overhead costs with the maximum amount possible being allocated towards advancing treatments. This nonprofit organization was founded by parents of children who suffer from GM1 who seek to save the lives of all those who suffer from this wretched condition. The Cure GM1 Foundation is dedicated to directly funding research for a cure for GM1 gangliosidosis – a lysosomal storage disease that attacks the brain and spinal cord, and is always fatal in children. GM1 is a progressive and degenerative condition with an extremely broad and debilitating array of symptoms and complications.
- 网站
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https://www.curegm1.org
Cure GM1 Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 1 人
- 总部
- Albany,CA
- 类型
- 非营利机构
- 创立
- 2015
- 领域
- Patient Advocacy、Fundraising和GM1 Research
地点
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主要
US,CA,Albany,94706
Cure GM1 Foundation员工
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BingYune C.
AI Builder | Leverages Machine Learning to Drive Business Growth | Speaker & Thought Leader
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Kylie Harrison, MS, RDN, CNA
Registered Dietitian and Certified Nursing Assistant
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Jeanine Jarnes, PharmD, MSc, BCOP, BCPS Rare Diseases, Pharmacotherapy, Pharmacogenomics
Assistant Professor, Department of Pediatrics, Medical School, University of Minnesota
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David Law MD
Medical Director, Filmmaker, Musician, and Rare Disease Advocate
动态
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Did you know that seizures require a cocktail of drugs for the majority of those impacted by GM1 gangliosidosis? FIRST AID for seizures: epilepsy.com/recognition #curegm1 #raredisease #community #epilepsy #neurology #seizures
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?? This is why we're here: to shine a light on GM1 and advance possible treatments. Every single passing moment we could be closer to an approved treatment, but our progress is dependent on YOU. Don't miss our $25K matching campaign! Donate now and double your impact today - all donations matched! GIVE: curegm1.org/donate ?? Every day counts - Let's change lives now! #curegm1 #hope #advocacy #research #nonprofit #community #nevegiveup
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The Ultragenyx Rare Bootcamp is an amazing experience with so much valuable information for members of the rare disease community to launch new projects and initiatives. We continue to push forward with respect to new innovative initiatives for GM1. Thank you to all the volunteers and speakers! LEARN MORE: rarebootcamp.com #curegm1 #raredisease #community #advocacy
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Every day, we are working to raise awareness, fund new drug development and research projects and to advocate on behalf of the global GM1 community for the advancement of possible treatments for a fatal disease. Your support has been instrumental in making this possible, and today, we're inviting you to be part of something even bigger. Your Gift Will Go Twice as Far! curegm1.org/donate #curegm1 #hope #donate #science #advocacy #raredisease #fightforlife
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We are pleased to welcome Paul to the team! BIO: Paul Fitzpatrick has nearly 30 years of biotechnology leadership experience including an impactful 20-year career at BioMarin, where he led the Biologics and Production Group, including scientific and operational responsibility for research stage biologics (ERTs) and AAV production, as well as early stage process analytics and structural, cellular, and protein biology fundamental research. Since then, Paul has worked at Zogenix, Inc. and Chameleon, Inc. doing further CMC and research work in AAV gene therapy. He now works as an independent consultant. Paul earned a Ph.D. in applied biochemistry from the Massachusetts Institute of Technology and Bachelor of Science degrees in both biology and chemistry from UC Irvine. #curegm1 #raredisease #hope #community #science
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Let's continue to push for treatments and to advance our fight for life! Will you participate in our community and donate now to help us earn a $25K match by 12/3! GIVE: curegm1.org/donate #curegm1 #hope #fightforlife #raredisease #nevergiveup #charity #advocacy #nonprofit
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Calling GM1 familes! If you have not received a rare bear already, order by 11/20 to receive a bear by year-end. International families are also eligible. ORDER: https://lnkd.in/g9NDpasm #curegm1 #holidays #community #raredisease #rarebear
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If love could cure GM1, it would have already been treated many times over. To our community, you have our respect and admiration. "Caregiving often calls us to lean into love we didn’t know was possible." -Tia Walker #curegm1 #hope #caregiving #community #advocacy
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"Every time I need to renew hope, I remember that even though this process is taking a long time, every single passing moment we could be getting closer to a possible approved treatment." -Iris's mom curegm1.org/take-action #curegm1 #hope #advocacy #community #families