FSH Society Ambassador Carden Wyckoff and her brother Spencer are at it again! This time, they will be traveling 79-miles through the Georgia portion of the Appalachian Trail to raise awareness and funds to cure FSHD.
Throughout the hike, sponsored by Vestigo, Spencer will be carrying his sister Carden on his back using a specially designed harness. Their father, Kurt, and sister, Virginia, are also set to join them on the adventure to spread the message that no matter what physical limitations are placed on you anyone can reach their goals.
“Being able to walk with someone on your back is an intrinsic reward,” says Spencer. “We are looking to prove that this journey, carrying someone on your back for 79 miles, is not impossible, and that Carden and others do amazing things themselves every day.”
(Via BusinessWire.) Acceleron Pharma Inc., a clinical stage biopharmaceutical company focused on the discovery, development and commercialization of innovative therapeutics to treat serious and rare diseases, today announced that it will host an educational webinar on facioscapulohumeral muscular dystrophy (FSHD) and the Company’s Phase 2 clinical trial of ACE-083 in FSHD patients. The webinar will be led by neuromuscular disease expert, Jeffrey Statland, M.D., M.P.H., and Acceleron management, at 10:00 a.m. EDT on Friday, October 28, 2016. Continue reading →
The laboratory of Peter Jones at the University of Massachusetts Medical School reports that Drosophila (fruit fly) lines for studying DUX4 and FRG1 overexpression are freely available worldwide from the Bloomington Drosophila Stock center under “Genes of interest for muscular dystrophy.”Continue reading →
Questions? Carden Wyckoff: 770-316-1900, or FSHDRSVP@gmail.com
Meredith’s home is wheelchair accessible with an accessible restroom. Though the driveway is fairly steep, the carport at the top of the driveway will remain open for drop-offs and pick-ups in front of the ramp entrance to the home. Parking is available on the street.
If you are a Federal employee, you are most likely aware of the Combined Federal Campaign, or CFC. It is the official workplace giving campaign of the Federal government.
Pledges made by Federal civilian, postal, and military donors during the campaign season support eligible nonprofit organizations that provide health and human service benefits throughout the world.
How can you help?If you are a Federal employee or know someone who is, please consider directing your support to the FSH Society when making your pledge to the CFC. Our CFC number is 10239. Continue reading →
This is a continuation of our Q&A session with Rabi Tawil, MD, co-director of the MDA Neuromuscular Disease Clinic at the University of Rochester, New York, and lead author of the first evidence-based care guideline for FSHD, a project the FSH Society supported through consultations and advocacy. Summaries of the guideline can be downloaded at https://www.fshsociety.org/resources/.
Part 1 of our session was published in FSH Watch 2016, Issue 1, and is available here.
Q: I was wondering if you could give us some options that are available for FSHD Type 1 females who may be interested in starting a family?
Dr. Tawil: One of the difficulties with FSHD is that the genetic test for FSHD needs a lot of DNA, and so this precludes doing what we call pre-implantation genetic diagnosis (PGD), except in certain situations. Continue reading →
The FSH Society is excited to announce the launch of the FSHD Biospecimen Registry, the first nationwide Facioscapulohumeral Muscular Dystrophy tissue registry. The registry, created by the FSH Society in partnership with the National Disease Research Interchange (NDRI), establishes a way for patients to arrange to donate tissue in advance of surgery and postmortem, and ensures that the tissue will be delivered to qualified FSHD researchers.
Muscle and other tissues from FSHD patients and relatives are truly precious and vitally important for the advancement of research. It is extremely difficult for researchers to obtain this tissue. Without sufficient access to patients’ tissues and cells, scientists will not be able to fully understand the biological mechanisms of FSHD and test strategies to treat the condition. Continue reading →