Sanfilippo Children's Foundation
16165855470
NSW 2010
sanfilippo.org.au
SFCFoundtn
Sanfilippochildrensfoundation
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Podobně sociální sítě (10974)
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Více Výzkum vrozených vad a genetických onemocnění
Novinky
Join us on 15 May for an important webinar on interim findings from 4 pioneering research projects. Two years after receiving support from Australia's Medical Research Future Fund (MRFF), researchers are ready to share their progress. Here's a breakdown of the research projects that will be discussed: 🟠Developing Nanoparticle Mediated Gene Transfer for Childhood Dementia. (Focuses on Sanfilippo syndrome.) 🟠Developing a comprehensive CSF and plasma biomarker panel for childhood dementia therapies. (Applied to all childhood dementia conditions, including Sanfilippo syndrome.) 🟠A new substrate reduction strategy to treat multiple childhood dementias: Glucosylceramide synthase-targeting antisense oligonucleotides. (Relevant to Sanfilippo syndrome.) 🟠Developing an mRNA-based gene therapy strategy for Niemann-Pick Disease Type C1: a blueprint to treat childhood dementia. (Can offer future blueprint for gene therapies across all childhood dementias.) There will be some technical information shared, but you don't need a science background to attend, and there'll be opportunities to ask questions and discuss these exciting projects. Register here: https://events.humanitix.com/mrff-webinar #ChildhoodDementia #MedicalResearch #Webinar #Sanfilippo #SanfilippoSyndrome #GeneTherapy #MRFF #ResearchFunding #dementiaresearch Please note: Sanfilippo Children’s Foundation has ceased to operate as a separate entity. Sanfilippo Children’s Foundation’s mission will be carried forward by Childhood Dementia Initiative, the organisation established to advocate for all children with dementia through research, care, and policy. Learn more about this change here: https://www.sanfilippo.org.au/blog/important-update-on-the-sanfilippo-children--s-foundation (fb)
Did you know speech and language changes are often the first signs of many childhood dementia disorders? These changes are crucial indicators of disease progression and treatment response. FREE EDUCATIONAL SESSION FOR HEALTH & CARE PROFESSIONALS Join us for the next online Childhood Dementia Community of Practice Project Echo® session on Thurs 1 May. Our upcoming topic is The Importance of Speech and Language in Childhood Dementia. The Community of Practice was established by Childhood Dementia Initiative to offer health and care professionals: ✅ Professional development ✅ Access to emerging evidence-based tools & resources ✅ Opportunity to connect with experts and peers in the field ✅ A way to contribute to a world-first knowledgebank improving children's lives globally It takes just one hour every second month, and is completely online. Register now at: https://www.childhooddementia.org/health-professionals/community-of-practice 👉Please share this opportunity with health professionals in your network. Please note: Sanfilippo Children’s Foundation has ceased to operate as a separate entity. Sanfilippo Children’s Foundation’s mission will be carried forward by @Childhood Dementia Initiative, the organisation established to advocate for all children with dementia through research, care, and policy. Learn more about this change here: https://www.sanfilippo.org.au/blog/important-update-on-the-sanfilippo-children--s-foundation #ChildhoodDementia #ProfessionalDevelopment #SpeechPathology #Education (fb)
Poslední komentáře
💖 Thank you Sanfilippo Children's Foundation for your incredible work! Together, we can bring hope to families and create a brighter future for our children. Let's keep pushing for research and awareness! #HopeForSanfilippodetail |
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🌟 Every contribution makes a difference! Proud to support the mission of the Sanfilippo Children's Foundation. Let's continue to fund research that brings us closer to treatments and a cure for this heartbreaking condition. 🧡 #CureSanfilippodetail |
Poslední diskuze
How can community engagement initiatives enhance awareness and support for Sanfilippo syndrome and the Sanfilippo Children’s Foundation?Odpovědí: 3, Naposledy před 1 den detail |
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What role do you think social media plays in raising funds and promoting research efforts for rare diseases like Sanfilippo syndrome?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
NSW 2010
O společnosti
- H20, H11 -
an important update on the future of the Sanfilippo Childrens Foundation A message from the Chair of our Board of Directors LEARN MORE What is Sanfilippo. Sanfilippo is a rare genetic condition that causes fatal brain damage. It is a type of childhood dementia and most children never reach adulthood. There is currently no treatment or cure available to children diagnosed with this devastating disease.
Výzkum vrozených vad a genetických onemocnění Podpora jediné organizace