Early bird registration is open! We are seeking sponsors and donors to ensure that the main event can remain free of charge for GM1 families. LEARN MORE: curegm1.org/conference Mail [email protected] if you are interested in receiving a sponsorship package. #curegm1 #raredisease #hope #community #events #advocacy #nonprofit #donate
Cure GM1 Foundation
非盈利组织
Albany，CA 1,063 位关注者
Action is Hope: Advocacy, Awareness, Drug Development, and Research for GM1 gangliosidosis, a fatal 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
获取路线
US，CA，Albany，94706
Cure GM1 Foundation员工
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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
Medical Director, Filmmaker, Musician, and Rare Disease Advocate
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Aubreigh Duits
Marketing student at University of North Carolina at Charlotte
动态
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NEW Designs are now available to get ready for GM1 Day and for spreading awareness each and every day! SHOP HERE: https://lnkd.in/d5pXCAgW https://lnkd.in/dhgPhUc5 curegm1.org/gm1-store #curegm1 #hope #raredisease #charity #giving #awareness #donate #give
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Are you very passionate about our critically important cause and want to help advance our work? We would love to hear from you! Please consider mailing [email protected] this month for an application and job description if you would like to learn more. curegm1.org/take-action #curegm1 #raredisease #hope #change #give #community #takeaction
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The impact of GM1 gangliosidosis on the lives of those affected is profound and life-changing. Help us create change by funding awareness, drug development and research. READ and SHARE: https://lnkd.in/d2ddiz4A #curegm1 #raredisease #hope #change #community #genetics #medicine
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Thank you David Law for honoring Violet and serving the global GM1 community in her honor.
Happy Rare Disease Day! Our darling Violet brought us into the world of rare disease, and in her memory we continue to advocate and stand for rare disease research and funding. In her life Violet benefitted greatly from participation in a clinical trial, and through various advocacy networks and channels we were able to share her story and join this courageous community. I continue to serve on the board of the Cure GM1 Foundation and work to be a voice even when times are difficult. Our life since Violet's passing has been filled with pain and love, joy and the sweetest sorrow, but through it our commitment to advocacy and this community has never wavered. Please join us in celebrating Violet, Rare Disease Day, and this population of rare disease children around the world. We love you, Violet. Now and forever. * Today is Rare Disease Day and it's a day in recognition of 300,000,000 people suffering from "rare" diseases. The reality is that the majority of diseases are "rare" or even "ultrarare." We are all unique in our own ways and people impacted by rare diseases such as GM1 deserve relief from incredible suffering and utter devastation. Power Critical Research: Donate to fund directly promising GM1 research initiatives that can find treatments to our children. GIVE: curegm1.org/donate You can make a meaningful impact, particularly in the face of all these cutbacks on the medical research and public health infrastructure! The time is now. #RareDiseaseDay #CureGm1 #GM1Gangliosidosis #CureViolet #Medicine #clinicaltrial
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We are grateful to GEMMA Biotherapeutics and James M. Wilson, MD, PhD for continuing to work on GM1 gangliosidosis.
James M. Wilson, MD, PhD founded two biotechs, GEMMA Biotherapeutics and Franklin Biolabs, to prove that gene therapies could be good business. “I think what we’re seeing now is more than a correction, and I’ll coin the term ‘irrational pessimism,’” Wilson said at #STATBreakthrough.
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We are tremendously grateful to Cat Lutz and her team for helping to create the first publicly available mouse models for GM1 gangliosidosis. READ MORE: curegm1.org/mousemodels #curegm1 #raredisease #hope #science #research #charity #genetics
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Flowers, bulbs, gardening supplies and more to help fund research, drug development, and awareness! SHOP NOW: curegm1.fpfundraising.com #curegm1 #raredisease #fightforlife #hope #community #donate
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The Cure GM1 Foundation supported the preclinical research to assist in moving an intravenous AAV9 gene therapy forward to the clinic. Newly diagnosed children are still enrolling in the trial at the National Human Genome Research Institute (NHGRI) today. ABOUT: curegm1.org/about-gm1 #curegm1 #research #genetherapy #raredisease #medicine #genetics #aav #donate #takeaction
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Now is the time to reach out to your governor, mayor or government officials to recognize GM1 Day in May. Awareness->Funding->Hope. ABOUT: curegm1.org/gm1day CONTACT: [email protected] to take part and to help #curegm1 #hope #raredisease #awareness #fundraising #donate #charity