Estamos muy contentos de anunciar que About FSHD, nuestro folleto esencial para todos los pacientes, familias, proveedores de atención primaria y otros, ha sido traducido al español. Damos las gracias a Manuel Gómez y al Dr. Alberto Rosa por su generosa ayuda. El folleto está disponible en formato descargable aquí.
The latest issue of FSH Watch is here! Highlights:
- Clinical Trial Research Network receives major NIH award
- World FSHD Day 2017
- FSHD Family Day Conference in Columbus, Ohio
- Bone health and FSHD
- FSH Society’s congressional testimony
- Why I donated tissue
- Ask the physical therapist (part 3)
- How can I use a planned gift to support the FSH Society?
- New FSH Society grants
- A Segway for mobility
Download the issue here.
Our 2016 FSHD Connect conference was held on Friday, November 11, (noon to 5:00PM) and Saturday, November 12, 2016 (9:00-5:00 PM), at Westin Copley Place Hotel in Boston, MA. The meeting brought together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. The 2016 meeting featured talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops.
The FSHD Champions, an international alliance of organizations that fund and advocate for FSHD research, will have its annual meeting immediately following the FSH Society’s 2015 International Research Consortium workshop. The leadership of these organizations will meet to discuss global collaborative initiatives to accelerate FSHD research, awareness and funding. For more information, click here.
Check out Greg Block’s post at the Friends of FSH Research website about the FSH Society’s FSHD International Research Consortium meeting: “Extracting the Big Picture from the 2014 International FSHD Meeting.”
The science we do now as a community is being adopted around the globe. Our experiments need to be creative, and the data need to be robust, reproducible, and right (the 3 R’s). The tools we develop need to be accessible and sharable. Efforts carried out by independent labs need to be complementary to the forward trajectory of the research landscape, and the need for open collaboration is greater than it’s ever been.
The FSHD Champions will be attending the 2014 American Society for Human Genetics annual meeting in San Diego, California, October 19-21. We will be at exhibit booth #1818. Come visit us! We will be happy to answer your questions about FSHD research and funding programs from our member organizations.