Videos

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APBD PSA 1:36| http://www.youtube.com/watch?v=fseIgb2z1H4
APBD Webinar Lesson July 2016 11:14 | http://www.youtube.com/watch?v=v-aliYrZBrE
We Are APBD 6:17 | http://www.youtube.com/watch?v=AC47MnRJPQg
Life Through a Lens – Trailer, Documentary 1:08 | http://www.youtube.com/watch?v=uLyRGxQ7v9g
Scientific Advisory Board 2:40| http://www.youtube.com/watch?v=1Vyqq3HGkXQ
Guaiacol improves outcomes in adult polyglucosan body disease model 9:53 | http://www.youtube.com/watch?v=GcoMmvVsC8s
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Personal narratives

Patient ‘s perspective

Symptoms

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We Are APBD 6:17 | http://www.youtube.com/watch?v=AC47MnRJPQg
Chuck Experience of Symptoms 2:01 | http://www.youtube.com/embed/fnY2ubL05LU
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Diagnosis

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We Are APBD: Patients describe their searches for a diagnosis 6:18| http://www.youtube.com/watch?v=AC47MnRJPQg
Sheila-Searching for a Diagnosis 2:15 | http://www.youtube.com/embed/ADOitXafYQY
Sheila-Mayo Clinic Makes a Diagnosis 2:26 | http://www.youtube.com/embed/PfYXUDeEluE
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Living with APBD

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Sheila’s positive attitude critical to coping with APBD 2:59 | http://www.youtube.com/embed/e29OlS3S6X4
Sheila-Thoughts and Hopes about APBD 3:02 | http://www.youtube.com/embed/xEu-XBmXGKA
Sheila-Lifestyle-Keeping it Simple 2:19 | http://www.youtube.com/embed/ChELgW3X0yc
Sheila loves the chat room and helps the APBDRF distribute brochures 2:27 | http://www.youtube.com/embed/EMgRF6HtzZU
Sheila – Strategies for Coping With APBD 2:16 | http://www.youtube.com/embed/U-mRGn9wMDE
David – A patient discusses the importance of the APBD Registry. 2:30 | http://www.youtube.com/embed/c1hZWxVzWy8
David – A patient discusses his involvement with the Adult PB Disease Research Foundation. 2:12 | http://www.youtube.com/embed/gSLQEg-O2O4
David – A patient discusses the importance of the Adult PB Disease Research Foundation (APBDRF) 3:18 | http://www.youtube.com/embed/BtJYLi2BLRI
Chuck 3:14 | http://www.youtube.com/embed/gdFJyLZt33o
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Caregiver/caretaker perspective

Diagnosis

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Art: After Receiving a Diagnosis 5:03 | http://www.youtube.com/embed/I3IezaVqvKk
Art: Searching for a Diagnosis 4:41 | http://www.youtube.com/embed/GvmwFwi3DGk
Art: Taking care of yourself as a Caretaker/Caregiver 5:05 | http://www.youtube.com/embed/7SOxxSW6cEM
Art: Being a Caretaker/Caregiver 3:35 | http://www.youtube.com/embed/5xnameSMUOw
Susan: Searching for a Diagnosis 3:16 | http://www.youtube.com/embed/SM9ONB_uEZc
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living with APBD

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Art: Advice from a caretaker 4:26 | http://www.youtube.com/embed/LN7jYuDDPF0
Art: Living with APBD 3:22 | http://www.youtube.com/embed/MQ35Ilu-q8Y
Art: Looking Towards the Future 3:02 | http://www.youtube.com/embed/b0pdUkS_IQE
SusanVideo-ACaregiver’sPerspective 3:01 | http://www.youtube.com/embed/qnWL_6D916A
Susan: Experience of APBD Symptoms 1:57 | http://www.youtube.com/embed/xr_OPCiz72I
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APBD and Aqua Therapy

[youtubegallery]http://vimeo.com/264466649[/youtubegallery]

Scientists speak

Scientists

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APBDRF: The Scientific Advisory Board 2:40 | http://www.youtube.com/embed/1Vyqq3HGkXQ
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Hasan Orhan Akman, PhD
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Columbia University Discovery of 2nd Mutation – For scientist viewers 10:55 | http://www.youtube.com/watch?v=i686iVR8rF0
Columbia University Discovery of 2nd Mutation – For lay viewers 7:04 | http://www.youtube.com/watch?v=no15_LPJY1o
Hasan Orhan Akman, PhD 1:47 | http://www.youtube.com/watch?v=O_gsx7Tc61I
Akman short 1: Significance of 2nd APBD mutation discovery 1:11| http://www.youtube.com/watch?v=d9RAamJtAbo
Akman 2: Registry will facilitate clinical trials 1:06| http://www.youtube.com/watch?v=0yig7U15Kvc
Akman 3: Second mutation discovery’s impact on other diseases 1:39 | http://www.youtube.com/watch?v=IgBTBIiNyjo
Akman 4: Animal Model and Diet 1:03| http://www.youtube.com/watch?v=-pi4y4y9BzU
Akman 5: Animal Model and Success with the Liver 0:56| http://www.youtube.com/watch?v=JImzpMSsOnQ
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Dr. Heather A. Lau
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Dr. Heather A. Lau, MD 2:23 | http://www.youtube.com/watch?v=1nPrQMbgUZs
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Dr. Brent Fogel
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Dr. Brent Fogel 10:47 | http://www.youtube.com/watch?v=mWnMXg795p4
ROBERT and DR. FOGEL 6:24 | http://www.youtube.com/watch?v=uXyA7SOCRXU
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Dr. DiMauro
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Dr. DiMauro speaks about Re-Search 0:41| http://www.youtube.com/watch?v=PkP3wFn41hg
Dr. DiMauro compares Pandora’s Vase to the Mitochondria 2:21 | http://www.youtube.com/watch?v=GAv8cUvpauE
The APBDRF honors Dr. DiMauro’s Mitochondrial Disease work 1:04 | http://www.youtube.com/watch?v=RnQCwWnPB3s
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Dr. Berge Minassian
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Dr. Berge Minassian 1:57 | http://www.youtube.com/embed/8IST-fI8zrc
Dr. Berge Minassian explains Lafora Disease in Miniature Wirehaired Dachshunds 38:27| http://www.youtube.com/watch?v=S-1PiTaE6rw
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Dr. Berge Minassian
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Drug Repurposing for Rare Diseases Scientific Conference 2017 5:27 | http://www.youtube.com/watch?v=pzMCkOGovwo&index=7&list=PLQbiN4husqo_aSCAu_KS8dRif4e7XqfOs
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Richard Buchsbaum

Dr. Berge Minassian
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Richard#1:Establishing 2:05 | http://www.youtube.com/embed/pmI3U8QaIm4
Richard#2-Significance 3:37 | http://www.youtube.com/embed/EbcUIm_BAGY
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Dr Kolodny

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APBDRF Presents: Edwin H. Kolodny, M.D. 2:05 | http://www.youtube.com/embed/Mq2o_Nj8nKE
APBDRF Next Steps: Patient Registry 2:28 | http://www.youtube.com/embed/yCcJOc0Zo4o
APBDRF: The Scientific Advisory Board 2:40 | http://www.youtube.com/embed/1Vyqq3HGkXQ
Dr. Berge Minassian 1:57 | http://www.youtube.com/embed/8IST-fI8zrc
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High throughput screening machine

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High Throughput Screening Robotics Demonstration 1:45 | http://www.youtube.com/embed/F4Q-Ir63pqQ
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Pepticom initiative

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Can LaTKE cure APBD 4:16 | http://www.youtube.com/embed/2MpPEv6IqgU
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APBD/KINDSight Project

Introduction

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Robert Zuckerman – APBD/ KINDSIGHT® – Be a hero 3:58 | http://www.youtube.com/embed/wpU3d2O6h2U
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Background

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Robert Zuckerman at Authors at Google, NYC 13:39 | http://www.youtube.com/embed/o__5_I7dQnA
Robert Zuckerman on NJN New Jersey Public TV | http://www.youtube.com/embed/3bmkPAM2YR4
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Events

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Jeff Rosenheim 6:09 | http://www.youtube.com/embed/VXGgwfT_F8c
Malaak Shabazz 4:57 | http://www.youtube.com/embed/eoJxzZ7_RV4
Robert Zuckerman and Natasha Bertrand – Final 2:02 | http://www.youtube.com/embed/f1SjxZYQ3KA
Mabou and Robert 1 | http://www.youtube.com/embed/tJ_FR9HSADc
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APBD Events

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Dr. Brent Fogel 10:47 | http://www.youtube.com/watch?v=mWnMXg795p4
Robert Speaks at The Edgemar Center for the Arts 2:34 | http://www.youtube.com/watch?v=EpBvKHHPZHM
Robert and Dr. Fogel 6:24 | http://www.youtube.com/watch?v=uXyA7SOCRXU
Hasan Orhan Akman, PhD (12.12.14) 1:47 | http://www.youtube.com/watch?v=O_gsx7Tc61I
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APBD/KINDsight® Project

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Robert and Deberah 4 3:20 | http://www.youtube.com/embed/autcLRajQ2U
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Documentary

[youtubegallery]
Official Trailer – Life Through a Lens – Trailer, Documentary 1:07 | http://www.youtube.com/watch?v=uLyRGxQ7v9g
Official Teaser – Life Through a Lens – TEASER, Documentary 2:39 | http://www.youtube.com/watch?v=0vSTDg0rAdk
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NORD

Rare Disease Day®

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Rare Disease Day® 2016 Highlights 3:46 | http://www.youtube.com/watch?v=T_h9WZjjZH0
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Other Scientific and Animations

APBD simplified

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Glycogen Animation 2 1:51 | http://www.youtube.com/embed/ZCf4Ano7jQY
Mnemonic Device for APBD 0:31 | http://www.youtube.com/watch?v=O2kJTPSx42Q
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Rare disease

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What is a rare disease? 2:13 | http://www.youtube.com/embed/MBwCcVGFODs
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Rare disease open call

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Rare disease open call 2:48 | http://www.youtube.com/watch?v=2-Ycumqhr1w
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Person specific

Art

[youtubegallery]
Art: After Receiving a Diagnosis 5:03 | http://www.youtube.com/embed/I3IezaVqvKk
Art: Searching for a Diagnosis 4:41 | http://www.youtube.com/embed/GvmwFwi3DGk
Art: Taking care of yourself as a Caretaker/Caregiver 5:05 | http://www.youtube.com/embed/7SOxxSW6cEM
Art: Being a Caretaker/Caregiver 3:35 | http://www.youtube.com/embed/5xnameSMUOw
Art: Advice from a caretaker 4:26 | http://www.youtube.com/embed/LN7jYuDDPF0
Art: Living with APBD 3:22 | http://www.youtube.com/embed/MQ35Ilu-q8Y
Art: Looking Towards the Future 3:02 | http://www.youtube.com/embed/b0pdUkS_IQE
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Sheila

[youtubegallery]
Sheila-Searching for a Diagnosis 2:15 | http://www.youtube.com/embed/ADOitXafYQY
Sheila-Mayo Clinic Makes a Diagnosis 2:26 | http://www.youtube.com/embed/PfYXUDeEluE
Sheila’s positive attitude critical to coping with APBD 2:59 | http://www.youtube.com/embed/e29OlS3S6X4
Sheila-Thoughts and Hopes about APBD 3:02 | http://www.youtube.com/embed/xEu-XBmXGKA
Sheila-Lifestyle-Keeping it Simple 2:19 | http://www.youtube.com/embed/ChELgW3X0yc
Sheila loves the chat room and helps the APBDRF distribute brochures. 2:27 | http://www.youtube.com/embed/EMgRF6HtzZU
Sheila – Strategies for Coping With APBD 2:16 | http://www.youtube.com/embed/U-mRGn9wMDE
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Susan

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Susan: Searching for a Diagnosis 3:16 | http://www.youtube.com/embed/SM9ONB_uEZc
Susan: Experience of APBD Symptoms 1:57 | http://www.youtube.com/embed/xr_OPCiz72I
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Chuck

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Chuck Experience of Symptoms 2:01 | http://www.youtube.com/embed/fnY2ubL05LU
Chuck 3:14 | http://www.youtube.com/embed/gdFJyLZt33o
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