Category Archive: Jonah’s Just Begun


Giving Tuesday- Giving changed me too

I wanted to help Jonah’s Just Begun so I contributed this to Giving Tuesday..please give it a vote.. November marks the anniversary four years ago that led to my commitment to try to help families find the cure for rare diseases that affect their children. One meeting at a conference led to a cascade of …

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A needle in a haystack

A busy day before going to the ACS. We have put a couple of similar posts (here and here) out in an attempt to try to identify some Sanfilippo type D (MPS IIID) patients or at the very least to get their families to register in the registry . This is like finding a needle …

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Find out more about Sanfilippo Syndrome and Charcot-Marie-Tooth

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 …

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Rare Occurrence Reception

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 …

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Postdoc position available – Phoenix Nest and LA BioMed/Harbor-UCLA

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). …

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Jonah’s Just Begun makes the TRAIN – the research acceleration and innovation network

One of the rare disease groups I help out, Jonah’s Just Begun (JJB) was recently highlighted on Faster Cures TRAIN. I was involved in helping to write Jill Wood’s responses to the questions posed. The Research Acceleration and Innovation Network (TRAIN) was established to create opportunities for medical research innovators to discuss and tackle the …

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