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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 weeks. This made news not only in the USA but elsewhere too. For example our friends at Hannah’s Hope Fund who work on Giant Axonal Neuropathy had some exposure in the BBC online as well as at other outlets (http://www.bbc.co.uk/news/world-us-canada-24525913). We are relieved that research at Government labs can restart but mourn the loss of several weeks of lost time which is a valuable commodity for anyone with a rare disease.

Second Jill volunteers her time with the Rare Disease Legislative Advocates which is a collaborative organization designed to support the advocacy of all rare disease groups and amplify their voices to ensure rare disease patients are heard in State & Federal Government. The RDLA is for rare disease organizations or individuals who are or who want to be legislative advocates. On October 10th they held the “Rare Voice Award”. Jill’s efforts to raise awareness for rare diseases on Capitol Hill, earned her one of these awards known as the “Abbey”.  Jill humbly accepted her award in memory of all the children who have lost their lives to Sanfilippo syndrome this past year. The full list of awardees is here and it illustrates that she is in distinguished company.

 

Congressional Leadership Award:

The Honorable David McKinley

The Honorable Michael Burgess

 

Government Agency Award:

Mike Astrue, (Former) Commissioner, Social Security Administration

Janet Woodcock, MD, Director, Center for Drug Evaluation and Research (CDER), Food & Drug Administration

 

Congressional Staff Award:

Art Estopinan, Office of Rep. Ros-Lehtinen (R-FL)

 

Patient Advocacy Lifetime Achievement Award:

Pat Furlong, Parent Project Muscular Dystrophy

 

Patient Advocacy Award:

Jill Wood, Jonah’s Just Begun

Finally I should mention that JJB is co-sponsoring a social event with EveryLife Foundation during the Partnering for Cures Conference in New York City in November.  The goal of this is to bring together rare disease advocates attending the conference with rare disease patients living in the New York area. We hope you will join Jill and colleagues for some food, drinks and networking.  It will be held on  Monday, November 4, 2014 from 6:00 – 8:00 pm at the Public House, 140 East 41st Street, NYC, NY.  Please R.S.V.P. jjenkins@everylifefoundation.org

Event Sponsors:

The EveryLife Foundation, Jonah’s Just Begun, Parent Project Muscular Dystrophy, Let Them Be Little, Global Genes Project

 

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