Care4ASH1L
Care4ASH1L | ASH1L | Canada
770690261
L4E0Z6
care4ash1l.com
Care4ASH1L
Care4ASH1L
Care4ASH1L
Care4ASH1L is a Canadian nonprofit organization dedicated to advancing research into the molecular mechanisms of the ASH1L gene and supporting the development of therapeutics for ASH1L-related disorders. The organization is federally incorporated in Canada and holds the charity number 77069 0261 RR0001.
History
The initiative behind Care4ASH1L began in early 2020 when two mothers, whose children have ASH1L mutations, connected on a social media platform. Inspired by a CBC podcast about another rare disease family, they were motivated to establish an organization focused on understanding and addressing ASH1L disorders.
Mission
Care4ASH1L aims to facilitate further research on the ASH1L gene by engaging with scientists and researchers. This includes supporting studies that could lead to the development of therapeutic treatments for individuals affected by ASH1L mutations.
Leadership
The organization is led by a board of directors, which includes:
- Mukti Reddy: Chair of the Board and President, based in Toronto.
- Kimberly Gauthier: Vice President, from British Columbia.
- Kevin Prenger: Secretary, from Ohio, USA.
- Jeffrey Kent: Treasurer, an Assistant Teaching Professor from British Columbia.
- Jeanine Alana McFarlen: Executive Member-at-Large, also from British Columbia.
Collaborations
Care4ASH1L collaborates with academic institutions such as Brown University, where Dr. Judy Liu leads an ASH1L research team. This partnership underscores the organization's commitment to advancing scientific understanding of ASH1L.
Community Engagement
Community support is crucial for Care4ASH1L. For example, schools in British Columbia have raised funds through entrepreneurial initiatives to support the organization's mission. Such efforts highlight the dedication and involvement of both local and wider communities in raising awareness and resources for ASH1L research.
[1] https://www.care4ash1l.com [2] https://www.care4ash1l.com/aboutus [3] https://mygivingcircle.org/care4ash1l [4] https://www.canadahelps.org/en/dn/67819 [5] https://www.rareconnect.org/uk/posts/8d6e3705-e480-4d2f-92e3-a7ef2bf6f5ff
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Novinky
📞 Exciting Collaboration News for the ASH1L Community! 🧬 Today, I had a promising phone call with Victoria Duke, the Research Coordinator at the Cornelia de Lange Syndrome (CdLS) Foundation. We discussed the Syndromes of Genome Balance Consortium—a groundbreaking initiative uniting researchers, clinicians, advocates, and families to accelerate discovery and identify shared treatment paths for rare genetic conditions like ASH1L. This consortium is unique because it brings together conditions caused by variations in over 200 genes—including ASH1L—that affect gene expression and transcription. The goal? Faster, collective progress toward targeted therapies and improved quality of life. 🌱 🧪 As a next step, we’re connecting researchers at Brown University and Michigan State University with the consortium to explore collaborative opportunities. This is a big step forward in amplifying ASH1L research through wider partnerships. Thank you all for continuing to fuel this momentum with your passion, advocacy, and lived experiences. 💜 Stay tuned for more updates! #ASH1L #RareDiseaseResearch #CollaborationMatters #GenomeBalanceConsortium #Care4ASH1L #StrongerTogether (fb)
To all the bravest Warriors and Moms (fb)
Poslední komentáře
So inspiring to see young minds like Ella and her classmates getting involved to support ASH1L research! Together, we can make a difference! 💖🙌 #ASH1LWARRIORSdetail |
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Huge shoutout to Dr. Judy Liu and her team for their hard work and dedication in advancing our understanding of ASH1L! Every step counts in the journey towards finding a cure! 🧬💪 #Care4ASH1Ldetail |
Poslední diskuze
1. How can local communities better support initiatives like Care4ASH1L to raise awareness and funds for ASH1L related disorders?Odpovědí: 3, Naposledy před 1 den detail |
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2. What are some effective strategies for NGOs like Care4ASH1L to collaborate with research institutions to accelerate the understanding and treatment of ASH1L gene mutations?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
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O společnosti
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CRA BN 77069 0261 RR0001 CARE4ASH1L STEM CELL BIOBANK RESEARCH GET INVOLVED DONATE ASH1L WARRIORS NEWS UPDATES SHOP More PARTICIPATE IN ASH1L RESEARCH AT BROWN UNIVERSITY Participate in the ASH1L Natural History Study Latest News Donate Now Ella Gauthier sister of our ASH1L Warrior Jack Gauthier and her class at Arthur Stevenson elementary grade 67 under the supervision of their teacher Mr. Kicia donated 10 of funds raised at the entrepreneur fair. Register to receive latest news updates DR. JUDY LIU HER ASH1L RESEARCH TEAM Dr.
Zdraví - Obecné a Rehabilitační N.E.C.
