Tuesday, November 29, 2011
Friday, November 25, 2011
Here is a personal look at Bill Moss - in his own words.
Mr. Moss has become a leader for those with FSH Muscular Dystrophy - putting his influence to help move this research forward worldwide.
Thursday, November 17, 2011
Your past support has been critical to the stimulation of new interest in Facioscapulohumeral (FSH) research. You have helped to attract research scientists and to fund novel FSH projects that have expanded the world's understanding of the mechanisms at work in this form of Muscular Dystrophy.
We invite you to join with us as we celebrate our successes and your partnership.
Tuesday, November 8, 2011
Saturday, November 5, 2011
Title: The FSHD Atrophic Myotube Phenotype Is Caused by DUX4 Expression
Authors: Vanderplanck C, Ansseau E, Charron S, Stricwant N, Tassin A, Laoudj-Chenivesse D, Wilton SD, Coppée F, Belayew A.
Publication date and journal: 28 Oct 2011 in PLos One
This work was done by the group of Alexandra Belayew in Mons, Belgium, in collaboration with Dalila Laoudj-Chenivesse from Montpellier, France, and Professor Steve D. Wilton from Perth, Australia, who does much work with exon skipping in Duchenne. Muscle cells of healthy individuals cultured in the laboratory in which DUX4 was introduced were much thinner (atrophic) than muscle cells without active DUX4. (Such thin muscle cells are seen in FSHD.) A number of genes characteristic for the diseased muscle were also found to be activated (Atrogin1, MuRF1, CRYM and TP53). These genes may be used to measure the effect of drugs.
Next, the researcher developed siRNA molecules against DUX4 (these are molecules that cause degradation of the DUX4 messenger RNA so no more DUX4 protein is made). Muscle cells cultured in the laboratory with active DUX4 which were treated with this anti-DUX4 siRNA were less thin 8 days after treatment than untreated muscle cells. They made less DUX4 and TP53 proteins. Antisense Oligonucleotides (AOs) were then developed against DUX4. This is a different kind of anti-molecule which is used for exon skipping in Duchenne. Muscle cells from people with FSHD cultured in the laboratory and treated with a low concentration of anti-DUX4 AOs had less DUX4 and TP53, without much effect on DUX4c, a gene similar to DUX4 which probably has an important function in the human body.
The group of Alexandra Belayew and other research groups worldwide are now working on developing DUX4 mouse models to test whether these anti-DUX4 molecules can slow, stop or hopefully even improve the health of diseased animals.
Click on "PLOS ONE" to read complete study report
Friday, November 4, 2011
Wednesday, October 19, 2011
“Become a Supporter” button
Monday, October 10, 2011
Whooping Cough (or Pertusis) is on the rise. As vaccines seem to lose effectiveness over time, adults need Pertusis booster every 10 years. Whooping Cough, also known as the 100 day cough, may not have serious consequences for healthy people but this condition can be life threatening for infants or vulnerable individuals. Get immunized!!
Saturday, August 27, 2011
Two research teams make steps towards a treatment for FSH
Monday, August 15, 2011
It is amazing the progress we have made - functioning from our home on a "all volunteer" basis without getting the support from our local press. Yet, our organization Friends of FSH Research (www.fshfriends.org) has been able to raise over a million dollars for FSH research and has helped launch pilot projects which generated new data, their findings which earned the respect and funding from the National Institutes of Health.
Facioscapulohumeral (FSH) Muscular Dystrophy, today believed to be the most common form of Muscular Dystrophy, (who knew that there are more than one form?) has received little research support in the past from the existing funding sources. This condition impacts the lives of those affected throughout their life span - causing a weakening then ultimately the death of the muscles of the upper back, upper arms and face. Eventually the muscle destruction extends into the muscles of the lower legs and trunk .... it is an unforgiving condition. Not a sexy condition, not one which attracts media attention... one often overlooked, forgotten.
Friends of FSH Research proves the "Power of One" - one family, one love for their child. We would not have been able to succeed without the internet, social media and the community. This is one story that has not yet been helped by traditional media - though I am still hopeful that one day they will pick up our story for I think it is one worthy of telling.
Friday, August 5, 2011
People with FSHD may also benefit from exercises carried out using the support of the system known as a standing frame, which is designed to support a person with mobility restrictions stand and then remain in a standing position. potential advantages of using a standing frame include preserving some range of motion, enhancing bone strength, growing blood circulation and realigning the position within the inner organs. Other possible advantages include worry reduction and lowered risks for any form of abnormal muscle and tendon shortening known as contracture.
Monday, August 1, 2011
I will start posting pictures and website links of the artists over the coming weeks - Please check out their artwork!
Wednesday, July 20, 2011
Tuesday, July 19, 2011
The Ways to Cope With (FSHD) Facioscapulohumeral Muscular Dystrophy : Progressive Muscular Dystrophy
Sunday, July 17, 2011
Thursday, July 14, 2011
Thursday, June 30, 2011
I wonder how other groups do this? in person contacts? emails? letters?
Feed back & ideas welcomed. (Donations greeted with great enthusiasm!!)
Friday, June 24, 2011
Wednesday, June 22, 2011
On June 23rd there is an exciting opportunity to put more "muscle" in your donation to Friends of FSH Research.
Give BIG is a community-wide giving challenge created by
The Seattle Foundation that will increase the size of your
donations to us.
This one-day, online charitable giving event will rally together our community on behalf of the amazing nonprofit organizations in King County - this includes Friends of FSH Research!
GiveBIG will grow your generosity in several ways:
· Grow your gift! The Seattle Foundation and local businesses will match a share of every contribution made through The Seattle Foundation's online Giving Center between 7 a.m. and midnight on June 23.
· Win a Golden Ticket! During the day, if your donation is selected at random, Friends of FSH Research will receive an additional $1,000 from GiveBIG's sponsors.
Your gift will help us support critical Facioscapulohumeral Muscular Dystrophy (FSH) research. Help us make a treatment or cure to this debilitating condition a reality now!
Mark your calendar now! Make your donation to Friends of FSH Research between 7 a.m. and midnight on Thursday June 23 through our page in The Seattle Foundation's Giving Center.
Help us make the most of GiveBIG! Here are a few more things you can do in addition to making a generous gift:
1. Mark your calendar today, so you don't forget to make a gift on June 23!
3. Rally your friends to support Friends of FSH Research on June 23! Email, Facebook, Twitter & phone calls are great ways to spread the word and help us take advantage of GiveBIG.
4. Be sure to share the link to our profile
Thank you in advance for Giving Big. With your help will truly be able to make a difference to those affected by FSH Muscular Dystrophy!!
PS: You can learn more about GiveBIG online atwww.seattlefoundation.org/GiveBIG.
Tuesday, June 14, 2011
Global gene-expression profiles of myoblasts from FSHD-1 and FSHD-2 patients and healthy controls in the context of myogenic differentiation are discussed.