A film for Rare Disease Day 2/28/15

I made this short documentary about Lucas' disorder Menkes Disease.

"Heart Breaking - and Heart Warming" - Rare Disease Report

So far it has been re-posted (or tweeted or shared) by Geek Magazine, BoingBoing, The Mighty, NORD, Show You, TechNewsNow , Global Genes Rare DailyRare Disease Report. On 3/16 it screened as part of the 2015 Patients as Partners Conference in Philadelphia. and at a Rare Disease event in NJ along with http://congenitalhi.org/chi-video/, and http://www.raredr.com/.../Our-Curse-Oscar-Nominated.... Orphan Druganaught Blog wrote about the film.  It will screen at The World Orphan Drug Conference in Washington DC. Update: it screened twice at this conference to a crowd of 500 and got a standing ovation.


  Medical Daily wrote a piece on it. Rare Gnemonics Tweeted it and FB posted it.

March 26, Miles Murdoch passed away. It was almost exactly 1 month after the film was completed, and just 2 months short of his 6th birthday. His mother plans to show the film at his funeral service.

It also screened April 19. in Warsaw Poland's largest theater as part ofwww.FestiwalMedeon.pl   

Official selection: International Film Festival of Environment, Health and Culture in Jakarta, Indonesia.

It screened July 7 in Tula Russia as part of Shortsfilm.ru.

Official selection 2015 Cinema Touching Disability, Texas.

Mary McDonnell tweeted about it 7/15/15.  After Global Genes ran a story.

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