We all know the dreaded Black Friday madness is almost upon us, and we know what your thinking:
Before you get […]
So much has happened in the last few weeks so we have a bit of catching up to do.
First, probably most importantly the US government shutdown is over for now and government employees can get back to work on science that affects rare diseases. For example critical research, protocol reviews and more were halted for […]
Back in February Amy Dockser Markus in an article on natural history studies for rare diseases in the Wall Street Journal (WSJ) had a quote that has resonated with me “The parents want different scientists researching the diseases to share data about the patients so the children won’t need to participate in so many […]
Chegou a altura de mais uma caminhada!
Desta vez, em Setembro, o clima mais fresco, ainda o cheiro a férias…Porque não um fim de semana diferente? O local, será a Arriba Fóssil da Costa da Caparica, classificada como Paisagem Protegida em 1984. Na beleza deste extenso pinhal, que se estende até ao limite da Arriba, […]
On May 5th, 2013, Jonny Lee Miller, who plays, Sherlock Holmes on CBS’s new hit show, “Elementary”, ran an ultra-marathon (50miles), in honor of , Jonah’s Just Begun. It took Jonny just under 13hours to complete the race.
Jonny set his monetary goal at $160,000 dollars, these proceeds will help initiate the Natural History Study (NHS) […]
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 […]
An Interview with Jill Wood (Citizen Scientist, Co-Founder and Treasurer, Jonah’s Just Begun (JJB) and CEO Phoenix Nest)
(full disclosure: Sean Ekins is CSO at Phoenix Nest and consults with JJB as well as the Hereditary Neuropathy Foundation and Hannah’s Hope Foundation).
SE: Today I am happy to introduce Jill Wood. Jill, can you please tell us a bit about your background and what you do?
JW: I graduated from Oregon State University with a […]
The route to helping flnd treatments for one disease may beneflt by helping research in another disease. We are taking this altruistic approach and recently submitted a winning project proposal for Sanfllippo Syndrome D which will not only beneflt research in this disease but also the other 3 subtypes A, B and C.
Sanfllippo Syndrome […]