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Jacel E.

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1 reviews

Review for Dravet Syndrome Foundation, Inc., West Haven, CT, USA

Rating: 5 stars  

My son was diagnosed at 6months with Dravet. II went online and found the foundations website! As a rare syndrome while my son was having a prolonged seizure I was just reading which medications not to administer from the Dsf website. I was desperate and Lori., the president called me back after I sent her an email, she gave me hope with her words and the warning of this horrible syndrome! the foundation has been like a family through their support group. They share my hopes, laughter and cries! The staff is working hard on research and just pray one day there is a cute for this. DSF has just granted my son with a cooling vest and an IPad we use during his therapy. I am extremely grateful to the foundation and staff for working hard on research and although they face the same problems all dravet parents do, they make theirselves available to lend a crying shoulder and give support! I will always be thankful to DSF for all the work they do and trying so hard on finding a cure,

Would you volunteer for this group again?


For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

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Role:  Volunteer