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For Patients & Families
A guide for newly diagnosed patients & families
Educational Videos
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ALD Connect Educational Videos (Videos & Webinars)

 
Video #1: A 10 minute overview of ALD 

This video seminar provides a basic overview of ALD for patients, families, and physicians.


What is a genetic disease?                                                                                0:00 – 0:38 sec
What gene is responsible for ALD and how is it inherited?                                    0:39 – 1:48 sec
How does the ALD gene defect lead to symptoms in men and women?                  1:49 – 2:39 sec
What is an ALD genotype and phenotype?                                                         2:39 – 3:50 sec
What should I know about the AMN phenotype?                                                 3:51 – 5:00 sec 
What should I know about the adrenal insufficiency phenotype?                           5:00 – 5:41 sec
What should I know about the cerebral demyelinating phenotype?                        5:42 – 7:39 sec
What should I know about diagnosis and treatment for ALD?                               7:40 – 8:25 sec
What is in store for people affected by ALD?                                                       8:26 – 9:28 sec 




Produced by Youreka Science in collaboration with ALD Connect, Inc.


Video #2: AMN Exercise Video 

This video was created by Ben Lenail, a 48-year old AMN patient, to highlight possible exercises (weight-bearing, balance, core strength, Pilates) for adult men and women suffering from AMN.

                           
This video starts with a 4-minute animated "whiteboard tutorial" on the physical limitations of individuals with AMN, and then shows Ben's exercise routine.



Produced by Ben Lenail in collaboration with ALD Connect, Inc.

 



Video #3  Introduction to Genomics 1.1:

How can your genome affect your health? 




Produced by Genetics & Genomics Education.



Video #4 Stem Cell Transplant  



Produced by bluebird bio.



Video #5 Gene therapy for CCALD 



Produced by bluebird bio.



Video #6  Drawn to Science: Clinical Trials



Produced by Roche.



Video #7  Young ALD Carriers: our stories



Produced by Y.A.C (Run for ALD).

 
 

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