We are planning a third webinar organized by GNE Myopathy patient and gne-myopathy.org. This webinar is on January 28, 2017 starting at 8:00 a.m. Pacific Standard Time. Our feature presenter will be Dr. T. Malan,* founder of the Innovative Cosmetic Surgery Center, based in Arizona, U.S.A. He has treated at least one GNE Myopathy patient. There will be a Question and Answer session followed by Professor A. Bhattacharya who will discuss the myth and reality of stem cell therapy. After this we will have a patient's perspective on her stem cell treatment.
Please refer to this flyer for more details on the webinar.
Please refer to this flyer for more details on the webinar.
Join us us from PC, Mac, Linux, iOS or Android: https://altvil.zoom.us/j/876241328
Or iPhone one-tap (US Toll): +14086380968,,,876241328# or +16465588656,,,876241328#
Or Telephone:
Dial: +1 408 638 0968 (US Toll) or +1 646 558 8656 (US Toll)
+1 855 880 1246 (US Toll Free)
+1 877 369 0926 (US Toll Free)
Meeting ID: 876 241 328
International numbers available: https://altvil.zoom.us/zoomconference…
Dial: +1 408 638 0968 (US Toll) or +1 646 558 8656 (US Toll)
+1 855 880 1246 (US Toll Free)
+1 877 369 0926 (US Toll Free)
Meeting ID: 876 241 328
International numbers available: https://altvil.zoom.us/zoomconference…
Or a H.323/SIP room system:
H.323: 162.255.37.11 (US West) or 162.255.36.11 (US East)
Meeting ID: 876 241 328
H.323: 162.255.37.11 (US West) or 162.255.36.11 (US East)
Meeting ID: 876 241 328
SIP: 876241328@zoomcrc.com
* Link for Dr. T. Malan's website: http://www.innovativecosmeticsurgery.com/about-us/
* Link for Dr. T. Malan's website: http://www.innovativecosmeticsurgery.com/about-us/
Reflections of a GNE Myopathy Patient
Here is a recent article written by a GNEM patient. It contains an impressive, genuine account into what life is like for many patients living with GNE Myopathy. Shilpi has been working tirelessly to increase the awareness of GNE Myopathy worldwide.
Link for the article: http://www.vartagensex.org/details.php?p=5883c5608f3de
Another piece of news on ManNac
This is in regards to ManNAc in which a recent federal contract has been put out for bid.
Part of the bid includes: "1. To develop a population PK model to describe the plasma concentrations of ManNAc and its metabolite sialic acid (Neu5Ac) following single and repeated oral dose administration to GNE myopathy patients;2. To perform Monte Carlo simulations using the population PK model to generate patient-specific plasma ManNAc and Neu5Ac concentration-time profiles for various ManNAc doses with the goal of finding the lowest possible dose of ManNAc which can produces sustained increases in Neu5Ac."
Here is the link: https://govtribe.com/project/development-of-a-population-pharmacokinetic-model-for-mannac-in-patients-with-gne-myopathy/activity
Ultragenyx's Upcoming Patients Day will be held on: April 22, 2017 in Novato,, California. Please register and apply for travel stipend if you plan on attending.
https://digital.lenos.com/keymeetings/UltragenyxPatientDay2017/Content/Welcome
https://digital.lenos.com/keymeetings/UltragenyxPatientDay2017/Content/Welcome
Latest Newsletter from GNEM-DMP:
This current newsletter features a friend of mine, who like me is living with GNE Myopathy. It contains much important information on GNEM. This newsletter has also been translated into many languages. Read more at: https://www.gnem-dmp.com/Home/Newsletters
This current newsletter features a friend of mine, who like me is living with GNE Myopathy. It contains much important information on GNEM. This newsletter has also been translated into many languages. Read more at: https://www.gnem-dmp.com/Home/Newsletters
Here is a link for Rare Disease Disease Day around the world: http://www.rarediseaseday.org/
