Me and fellow Wolfram syndrome families from Italy along with Dr. Urano.

I attended my 3^rd Wolfram symposium held in Paris France this past week. I brought along with me my sweet daughter Raquel and our babysitter, Kat Broom. I felt it was important to let Raquel experience Paris before she completely loses all of her eyesight.  As of now, she is considered legally blind.

I am usually invited to the Paris Wolfram symposium because I represent a foundation from the United States that has been raising money to help fund Wolfram syndrome research. This research will ultimately lead to a drug therapy.

The meeting is comprised of researchers, scientists and doctors who discuss their discoveries over the last 18 months. Half of the information that was shared was way over my head. Towards the end of the meeting I decided to be brave and speak up. I shared my feelings that although all their studies on various aspects of Wolframs are important, we need to discover drug therapies to stop the progression of this disease. (I had to back pedal a little and re-state my words because I came across a little harsh and straight to the point. For those of you who really know me, that would not surprise you).

Raquel lighting at candle for her cousin Jake at one of the beautiful Paris cathedrals.

This whole ordeal is a slow process, I understand, but as a mother who has to continually watch her child suffer because of this disease, I feel like we are going at a snails pace. I had a couple individuals speak their mind as well, and it was not in my favor. I held my own though, with the exception of breaking out in a rash on my neck and chest because of my nerves. I made it very clear that these children and young adults do not have time to wait. If the money is being raised, lets hit this and hit it fast. My goal when I return to Paris (which will be in another 18 months) is that I will be able to let all these individuals know that my previous comment about going to slow was just what they needed to hear. You can have all the brilliance of M.D.s, Ph.D.’s, scientists etc. but never, I say never go up against a MOM! You are not going to win…