We’re honored to announce that we’ve been selected as a 2024 #RAREis Global Advocate Grant recipient by Amgen's #RAREis program. This recognition underscores our unwavering commitment to the MSD community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this #RAREisGrant, we’re motivated to better connect and inform our MSD families through a special patient portal as we continue raising awareness and expanding our efforts in education and advocacy for all those living with MSD and their loved ones. Learn more here: https://bit.ly/3Z6sfSP
CureMSD
Non-profit Organizations
Biloxi, Mississippi 878 followers
Together We Can. #TogetherWeCan #CureMSD
Über uns
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.
- Website
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http://www.CureMSD.org
External link for CureMSD
- Industrie
- Non-profit Organizations
- Größe des Unternehmens
- 2-10 Mitarbeiter
- Hauptsitz
- Biloxi, Mississippi
- Typ
- Nonprofit
- Gegründet
- 2016
- Spezialitäten
- Medical Research, gene therapy, rare disease, patient advocacy, fundraising, family support, newborn screening, special needs, and neurodegenerative diseases
Standorte
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Primäre
Wegbeschreibung erhalten
Biloxi, Mississippi 39533, US
Employees at CureMSD
Aktualisierungen
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👶 Did you know September is Newborn Screening Awareness Month? This simple test can detect serious conditions in newborns, giving them a better chance at a healthy life. Let’s raise awareness and ensure every baby gets the care they deserve. #NewbornScreening #RareDisease
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We're looking for change makers to join our board! Are you committed to making a difference in the lives of those affected by MSD? We're seeking dedicated board members to help us advance research, provide support, and raise awareness for our community. If you're interested learning more, review the description at https://lnkd.in/gYihXBXY #RareDisease #Nonprofit #BoardService
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Happy Birthday to Riley! Today he turns 13! Please wish Riley a very happy birthday in the comments! #EveryBirthdayIsSpecial #TogetherWeCan #RareAware #MultipleSulfataseDeficiency
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We are happy to announce the application deadline for the 2024-2025 United MSD Foundation Student Ambassador Program has been extended to Friday, August 30th! This is a great opportunity for students interested in patient advocacy and non-profit work! The role and activities of each Student Ambassador will be unique to their strengths, knowledge, network, and comfort. Apply here: https://lnkd.in/gDVkFARs
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We are honored to have received a $5,000 contribution to our foundation from the Rotary Club of Ocean Springs. Their donation will help support our mission to bring hope and healing to families affected by MSD and support them in their research to find a cure. Pictured is Amber Olson, founder of the United MSD Foundation, receiving the check.
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Today, we are wishing a very happy 11th birthday to Willow! Join us in the comments to wish her a happy birthday on this special day! #EveryBirthdayIsSpecial #TogetherWeCan #RareAware #MultipleSulfataseDeficiency
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Applications for the 2024-2025 United MSD Foundation Student Ambassador Program are still open! This is a great opportunity for students interested in patient advocacy and non-profit work. Check out some quotes from current Student Ambassadors about their experience in the program! The deadline to apply is this Friday, August 23rd, 2024. Apply here: https://lnkd.in/gDVkFARs
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CureMSD reposted this
Genetic Counselor | Clinical Marketer | Certified Career/Life Coach | Rare Disease Patient Advocate | Program Manager
As you all know, I'm a HUGE proponent of getting individuals involved in non-profit advocacy work and this is a great opportunity to do that! If you're a student looking to add to your resume and to develop marketing and fundraising skills while working for a non-profit, patient-driven organization, this might be for you! CureMSD is looking for students to apply for their United MSD Foundation Student Ambassador Program! No prior medical or rare disease knowledge is required to become a student ambassador! They will teach you the basics of MSD and similar conditions, so that you begin to build an understanding of what MSD is, and learn valuable skills that can be used across the non-profit sector and in the field of genetic counseling. The deadline to apply is Friday, August 23rd, 2024. Apply now with this link: https://lnkd.in/gBauPyra.
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CureMSD reposted this
Pat O'Connor spent 7 years filming his powerful new doc THE ZEBRA AND THE BEAR, which screened at the International MSD Scientific & Family Conference in Philadelphia.To learn how you can host a screening in your community, visit https://lnkd.in/gWGhXpCv Thanks again to CureMSD Children's Hospital Philadelphia and Ultragenyx “In the world of rare disease, nothing is more powerful than a mother’s love” - THE ZEBRA & THE BEAR Film Original song by @dellamemoria #zebrabearfilm #careaboutrare #raremamabear https://lnkd.in/gH6eGFBg