We are a leading patient advocacy organization dedicating to advancing research of Leigh syndrome and empowering and supporting affected families worldwide. Our mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures. We fund research and provide comprehensive resources for the community, including a global patient registry for Leigh syndrome, an educational website AboutLeighSyndrome.com, Leigh syndrome healthcare providers directory, annual Leigh syndrome virtual symposium, support resources for patients, and opportunities for free genetic testing, among other initiatives. Our foundation is volunteer run and parent led, 100% of your donations are tax-deductible and will go directly to research dedicated to mitochondrial diseases. You can learn more at our website: https://www.curemito.org/ You can donate at: https://www.curemito.org/ways-to-give You can learn more about Leigh syndrome global patient registry at: https://www.curemito.org/leighsyndromeregistry
Cure Mito Foundation的外部链接
US，Texas，McKinney
Associate Director, Statistical Programming at Alexion | Board member and patient registry director at Cure Mito Foundation | Rare Disease patient advocate
It was great to see Dima Martini-Drew MD, Michal Minczuk, and Krista Casazza at the Mito Summit in Boston and share about Cure Mito Foundation, our registry and Critical Path Institute (C-Path) mito taskforce. Thank you Celine Shin and all the organizers!
Have you ordered holiday cards? Get 20% off your purchase with Minted with code FUNDRAISECUREMITO. Minted will donate 15% of your purchase back to Cure Mito. Thank you so much for your support!! #curemito #leighsyndrome #mitochondrialdisese #hope #research #mito #holidayseason #holidayshopping
A new study explored patient preferences and risk tolerance for gene therapy among individuals affected by lysosomal storage diseases with varying prognoses and treatment options. Findings revealed that those with more severe conditions and limited therapeutic options were more risk-tolerant, while those with better prognoses were more cautious. The study highlights the importance of incorporating patient preferences into the development of innovative therapies to ensure alignment with their needs and expectations. Learn more: https://lnkd.in/eRNn2PJc
What are your best tips to make holidays more enjoyable? Share your ideas to support and inspire other families! #leighsyndrome #mitochondrialdisease
Parents of children with life-limiting diseases such as Leigh syndrome often face immense stress. ?? You're not alone—explore resources and support designed for you. Visit: curemito.org/support #LeighSyndrome #ParentSupport #CureMito #mitochondrialdisease
?? Giving Tuesday is coming up on December 3! ?? ??? Your support helps fund research, provide vital resources, and bring hope. Every donation counts. ?? Donate now: https://lnkd.in/dC77Jkv8 ?? #GivingTuesday #CureMitoFoundation #LeighSyndrome #DonateNow
Thank you so much to the Green family and Aqua Ducks for a fundraiser and a walk honoring Bradlee and benefiting Cure Mito! ????♂? #CureMito #leighsyndrome #mitochondrialdisease #InMemoryOfBradlee
Thank you Biomed News! We always look forward to getting our weekly selection of papers and sharing them!
Thank you to Sophia Zilber ?? at Cure Mito Foundation for using our platform and writing a testimonial for us. You can sign up to receive alerts here https://lnkd.in/eHuCZscT. You can start a report on your own topic of interest here https://lnkd.in/ecAdsgWb
Join Leigh syndrome patient registry by December 31st for your data to be included in the next registry publication. Joining is easy - watch to the video to see how! #leighsyndrome #mitochondrialdisease
Are you receiving our news and updates? Our newsletters come once a month and are full of valuable information! Please sign up by visiting our website: https://www.curemito.org/ #leighsyndrome #mitochondrialdisease