One important guidance in selecting research projects candidate to fund is to consider the medical needs of the LGMD2I community. While curative technologies are developed with a primary regard to the molecular cause of the disease, the selection of technologies aimed at maintaining a decent level of wellbeing and at slowing down the disease needs to be guided by the medical needs of the LGMD2I community.

Sometimes questions about disease coping behaviors or about medical practices to solve a comorbidity are more easily answered by surveying the people themselves. This page has been created to answer some of these questions.

Cardiac and Respiratory Impairments

Cardiac and respiratory impairments occur often when affected by LGMD2I. we are interested in determining the number of persons in the LGMD2I community that use respiratory aid at night. Please answer only once.

Question 1

Genome Sequenced

We are interested in determining 1/ how many people have had their whole genome sequenced, and 2/ how many of these people would be willing to share the sequence with scientists for specific research study. Please answer both questions only once.

My whole genome was sequenced:
I am willing to share:

Steroid Usage

We are interested to learn 1/ how many people have taken steroids after recommendation by their doctors, 2/ how many of the people that took steroids have stopped because of side effects or lack of benefits, and 3/ how many in the LGMD2I community at large see negatively the use of steroids? Please answer all questions only once.

I have taken steroids because my doctor recommended it:
I see negatively the use of steroids for LGMD2I: