ALLFTD Study

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Jackfishem

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Joined
Dec 29, 2015
Messages
22
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
LA
City
Lake Charles
Hi folks! My mom was dx with frontotemporal dementia in 2014, was dx with ALS in 2015, and died in early 2017. Her brother and her brother's son both had ALS. Mom was in some studies related to dementia at Houston Methodist. The researchers who worked with her just reached out to me asking me to participate in a new study. It sounds like it is similar to the study in Miami, but from the FTD perspective. I thought some of you may be interested. The website is www.allftd.org. Houston is only a couple hours away from me, so I plan to sign up.

Best to all - Jackfishem
 
thanks for sharing and good luck with the study

this study actually has multiple sites so if your family history fits take a look and see what is nearest. The Mass General version pays travel expenses Maybe they all do

if you are doing a FALS observational study that does not preclude participation in this and vice versa. Just don’t bite off more research obligations than you can chew
 
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