Brown-Vialetto-Van Laere

This syndrome is rare, and I am trying to find other families with it. From what I've been told by the best docs in the country is that most BVVL cases go either undiagnosed or misdiagnosed. Symptoms usually begin sometime within the first three decades of life and can include at least two of the following: vocal chord paralysis, facial palsy, dysphasia (swallowing difficulties), ptosis (eyelid drooping), neck and shoulder weakness and hearing loss. Please, help me find others.