Here is a brief introduction from one of their founding members, written Dec. 2008 -
Let me introduce FSHD ITALIA Onlus -- we are Italy's newly born FSHD patients' association. Our headquarters are in Rome with Policlinico Gemelli and the head of our scientific board is Prof. Enzo Ricci, lecturer at Cattolica University, Department of Neuroscience.
The long-established expertise of Prof Enzo Ricci (15 years of genetics and clinical studies specifically on FSHD), the trust of his patients, and last but not least the existence of reserch projects against this pathology, have been the robust grounds for the birth of FSHD ITALIA Onlus.
I wish to give you a preview of our activities by attaching a press release which will be run through the Italian press on Jan 15. As you will read, our objectives are:
- Fundraising to fuel research (two key projects are already in place and only need funding in order to accelerate outcome achievement)
- Support of people affected by FSHD by providing key info on how to improve quality of life
- Create a culture around FSHD by developing awareness with clinicians, physiotherapists, media and private/public organizations.
- Interfacing & collaborate with other associations and research centers at global level.
Our logo, the happy flying turtle, has a very strong symbolic meaning as in the face of FSHD we do not want to sit and cry on ourselves but rather we intend to fight this disease armed by a positive and proactive attitude.http://fshditalia.it/
We are so pleased to have another organization with a similar focus and goals working to give those living with FSH Muscular Dystrophy new hope!!
Amici benvenuti!! (Welcome Friends)