In addition to word of mouth, writing can be a powerful tool to get people involved!
- Mark your calendar for the Annual Auction and tell others about it.
- Sign the current petition demanding more funding for Facioscapulohumeral Muscular Dystrophy Research.
- Write to your Congressman/Senators and ask for increased FSH funding from the NIH.
- Write to the Muscular Dystrophy Association and ask for greater equity in their research allocations - there are more than 35,000 people with FSHD in the United States alone that deserve to have efforts made on their behalf to encourage & support research.
- If you have FSHD, sign up with the National Registry at Rochester University Medical Center. From the clinical information & the data from the registry and other studies there is a better knowledge of how the different symptoms of FSHD progress & what may be the most important features to measure in determining the effectiveness of new treatments. The Registry is poised to assist researchers, different funding agencies, and pharmaceutical companies in carrying out these studies. There is a need for the Registry membership to grow & continue to increase the information in the database. The members of the Registry are vital to the success & each member plays an important role in helping to better understand the symptoms of FSHD.
- Also, if you have FSHD, please donate a biopsy for research. Contact FSH Friends if you need any information on this.
- Share the story of how you live with FSHD.
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