MitoAction is a finalist

Posted October 17th, 2012 by admin

We need your votes! MitoAction is a finalist in the Deep River Snacks Enjoy Life Naturally photo contest and we have a chance to win $5,000 that will support our outreach programs.

Gwen DRS contest Click here for the contest submissions on Deep River Snacks’ Facebook page, select MitoAction to view our photos, and then place your votes.

The contest ends Oct. 31. Let’s be the charity with the most votes! Thank you for your continued support.

http://mito.convio.net/site/MessageViewer?em_id=8761.0&dlv_id=16841

 

PittsburghGives

Posted October 1st, 2012 by admin

http://www.pittsburghgives.org/

I have some really exciting news. The UMDF has been invited to participate in Day of Giving 2012 through PittsburghGives.

 

Webinar

Posted September 25th, 2012 by admin

PLEASE NOTE CHANGE TO OCTOBER 5, 2012

Patients, parents and families – please join us next Friday by teleconference to learn more about this exciting mitochondrial disease clinical trial.

Results from the Edison Pharma EPI-743 Phase 2A Leigh Syndrome Trial: An update with Dr. Miller and Dr. Enns

Join us for a very important discussion about the recent news from Edison Pharma regarding the EPI-743 trial for children with Leigh Syndrome. In mid-September, Edison announced positive results of their Phase 2A clinical trial for children with Leigh Syndrome conducted in Rome, Italy. All children treated showed reversal of disease progression. Following this unprecedented news, the results were published online in the September 10 publication of the journal of Molecular Genetics and Metabolism. At the same time, Edison announced that EPI-743 had received orphan drug designation from the European Medicines Agency (the European equivalent of the US Food & Drug Administration).

Dr. Greg Enns from Lucille Packard Children’s Hospital at Stanford University and Dr. Guy Miller, physician and CEO of Edison Pharma will offer an explanation of the exciting progress of EPI-743 as well as answer your questions via a live teleconference on Friday, October 5th.

Topics for this call include:

What is EPI-743 and who has been treated so far?
What do the results from the Phase 2A trial mean for the mitochondrial disease patient community?
Who is currently eligible for treatment by EPI-743?
What does orphan drug designation mean, and how does it impact the availability of EPI-743?
What does the data demonstrate about safety and effect on mitochondrial disease symptoms for those who were treated by EPI-743?
What should interested patients and families do to become involved in this trial?
Where can physicians and families go for more information?

Join us in this special teleconference offered in collaboration

 

 

Friday, October 5th at 9 am PDT/12 pm EDT

To join the online event
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1.Click hereto join the online event.
Or copy and paste the following link to a browser:

https://umdf.webex.com/umdf/onstage/g.php?d=666532607&t=a&EA=cliff%40umdf.org&ET=6d7b7a0eff297051295e2afc940b5514&ETR=699421df03664ed48b35a199d95c31bb&RT=MiMxMQ==&p

2. Click “Join Now”.

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To join the teleconference only
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Call-in toll-free number (US/Canada): 1-855-244-8681
Call-in toll number (US/Canada): 1-650-479-3207
Global call-in numbers:https://umdf.webex.com/umdf/globalcallin.php?serviceType=EC&ED=103986082&tollFree=1
Toll-free dialing restrictions:http://www.webex.com/pdf/tollfree_restrictions.pdf
Access code: 666 532 607
Please send questions in advance toinfo@mitoaction.orgorconnect@umdf.org