Sep
09
Previously I had written about the need to find patients for Sanfilippo Syndrome IIIC and IIID to join a registry and take part in a Natural History Study. In fact I keep writing about it in as many places as I can. In addition we are actively working with academics to develop treatments so it …
Jun
01
A couple of diseases I work on are described in two of recent newsletters. First up is Sanfilippo Syndrome, which is described in the Lysosomal Disease Network’s newsletter Indications. This describes Jonah’s Just Begun and Phoenix Nest and was written By Jill Wood. I did a bit of proof reading of this article so I …
Jun
11
Jill Wood from Jonah’s Just Begun has a cocktail event planned in New York next week to raise money to fund a postdoc in one of the labs doing Sanfilippo syndrome research. This is obviously something I am very close too. It just shows the willingness and generosity of those involved to help out (Jonny …
Apr
15
Yesterday our posting for a postdoc position on ScienceCareer jobs went live. My emails are going to go into overload.. Its a long story which I will save you from for now. In my effort to help on Sanfilippo Syndrome research Jill Wood (Jonah’s Just Begun) connected me with Dr. Patti Dickson, MD (LA BioMed/Harbor-UCLA). …
Feb
10
It is with great sadness that today’s post is dedicated to the memory of Benjamin Alexander Siedman. His foundation Ben’s Dream – The Sanfilippo Research Foundation has done so much to fund research and raise awareness of the disease which will be the focus of this installment of A rare disease a day (following on …
Sep
05
Sometimes you meet people that truly inspire you to do more, question what you have been doing and rethink your goals in life. But when you meet three of them in a short space of time you realize that something transformative is happening. In the space of two years three non-scientists have overtaken all my …
