The Chris Carrino Foundation for FSHD recently created a fundraising page through FirstGiving.com.  FirstGiving offers tools and expertise to connect with friends and family and make fundraising less overwhelming – and even fun. Easy to use online tools for creating a personalized fundraising page in just minutes, allowing you to meet and exceed your fundraising goals. A page with your own unique web address allows you to tell your personal story of fundraising, encouraging donors to be engaged in your cause. Online tools that make it simple to leverage your networks, including the use of tools such as email, Facebook, Twitter, and your own blog. A means to raise awareness about important issues and raise money in a fun and engaging way. Does this cost anything? Your FirstGiving page is free.  FirstGiving sends all donations directly and securely to the Chris Carrino Foundation donation page, where we will pay a nominal fee for using their service. Is this site secure? 100%! Keeping your information safe from identity theft and internet fraud is FirstGiving’s priority.  FirstGiving is VeriSign secured and PCI … Continue reading →

The Chris Carrino Foundation for FSHD, together with researchers at State University of New York at Stony Brook and the New York Institute of Technology’s College of Osteopathic Medicine, is seeking volunteers for a collaborative research study into genetic factors determining FSHD severity.  FSHD severity varies significantly, even within families sharing the same common genetic mechanism, implicating other potential genetic “modifier” factors, which this study aims to uncover.  Uncovering these factors could improve understanding of the disease and, ultimately, help in the search for novel treatments. This study is open to recruitment for individuals with FSHD who are over 18 years of age.  There is no cost for participation and an on-site visit is not required. Interested individuals will be mailed a saliva sample collection kit together with a health questionnaire and permission to review relevant medical records upon enrollment. For further information or enrollment please contact Jennifer Burgess at JenniferBurgess@chriscarrinofoundation.org or the principal investigator, Dr. David Tegay, at (516) 686-3897, or by e-mail at dtegay@nyit.edu.