Have you registered for #ZebraRun yet? Help us fill up our map! We are looking for participants in all 50 states (and beyond)! We are excited to race with you Michigan! Don't see your state? Register today and join in on the fun. See you March 29th! https://ow.ly/kSmR50Vlaqe
关于我们
Our mission is simple, yet powerful: To cure Multiple Sulfatase Deficiency. Multiple Sulfatase Deficiency (MSD) ia a rare genetic, progressive, neurodegenerative disease caused by the build up of cellular waste throughout the body leading to neurologic regression and multisystemic symptoms. Children with MSD rarely survive past their 13th birthday. Currently there is no treatment or cure available for MSD; however, there is hope. Various mutations of the SUMF1 gene are known to be the cause of MSD, and the knowledge of these specific gene mutations allows researchers and doctors to move forward and find a treatment and cure. Gene therapy could help slow the progression of the disease, and possibly deliver a cure. The United MSD Foundation is currently working with partner organizations, researchers, and doctors from all over the world to fund a first-in-human gene therapy clinical trial. Additional initiatives include continuing to identify patients worldwide, the development of a patient registry and biobank, and advocating for newborn screening across the United States.
- 网站
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https://www.CureMSD.org
CureMSD的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Biloxi，Mississippi
- 类型
- 非营利机构
- 创立
- 2016
- 领域
- Medical Research、gene therapy、rare disease、patient advocacy、fundraising、family support、newborn screening、special needs和neurodegenerative diseases
地点
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主要
获取路线
US，Mississippi，Biloxi，39533
CureMSD员工
动态
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Shout out to our Supporter Sponsors - thank you for helping make the 8th Annual Zebra Run for Rare Disease a huge success! There is still time to register - sign up today! https://ow.ly/BW1Q50VkbU8
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We're #hiring a new remote, part-time Marketing and Communications Specialist. Do you know someone who would be amazing at this job? #marcomm #nonprofitjob #raredisease
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Today we remember Jill Anseth, who passed away from MSD 34 years ago today at the age of 14. The joy and love she brought to her family and to all who knew her will forever be cherished and never forgotten. #MSDAngel #NeverForgotten
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#ICYMI - Check out United MSD Foundation Executive Director Sarah Cortell Vandersypen talk to WXXV 25 about the upcoming Zebra Run. Not registered yet? No problem! Sign up today and we will you on March 29th! https://lnkd.in/g4AASkDM
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Shout out to incredible Gladiator sponsor Rich Schega with Magnolia Wealth Strategies. A long time supporter of the foundation since 2017 and a member of our board since 2020, Rich is currently serving as our Board President. Thank you for your generous support and for your dedication to our team, our mission and our families we serve everyday. Register for Zebra Run today! https://ow.ly/uVCN50Vip45
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Shoutout to our incredible Advocate level sponsors for the 8th Annual Zebra Run for Rare Disease! Thank you to Allergy, Asthma & Immunology - Dr. Paul Niolet, The Citizens Bank, Mosaic Church, The First Bank, Cadence Bank, Bienville Orthopaedic Specialists, Chevron, Holcomb Financial AJH Enterprises Inc, Mississippi Power Community Connection General, PT Solutions, Gulf Coast Human Resource Association, Coca-Cola United Bottling Co, Singing River Federal Credit Union, and Madison Wall Photography. Your generous support enables us to continue running with our mission to #CureMSD. Thank you! It's not too late to register for Zebra Run - sign up today and get ready to race on March 29th! https://ow.ly/qRse50VhvbL
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Have you registered for #ZebraRun yet? Help us fill up our map! We are looking for participants in all 50 states (and beyond)! We are excited to race with you Florida and Massachusetts! Don't see your state? Register today and join in on the fun. See you March 29th! https://ow.ly/EzU550VgPmW
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MSD research has benefited from NIH funding. Please complete this advocacy alert! #raredisease
#Congress is considering cutting critical funding to #NIH and #FDA, two institutions essential for researching and approving new #RareDisease treatments. Ask your representatives to protect this funding, here: https://lnkd.in/eS58MV3M With less than 5% of #RareDiseases having approved treatments, now is not the time to stop investing in this work. Thank you for using your voice!
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Shoutout to our incredible Fighter level sponsors for the 8th Annual Zebra Run for Rare Disease! Thank you to Armand Place LLC, Benjamin F. Edwards - Angela Wolf, Dave Philo, Eye Associates of the South, Gulf Coast Silk Screening, Memorial Hospital, Mitchell Distributing Company, MS Pediatric Associates, NEXTAFF (Gulf Coast MS), Singing River Health System, and Victory Behavioral Center. Your generous support enables us to continue running with our mission to #CureMSD. Thank you! It's not too late to register for Zebra Run - sign up today and get ready to race on March 29th! https://ow.ly/fsai50Vev9n
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