- Видео 175
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Adult Polyglucosan Body Disease Research Foundation (APBDRF)
США
Добавлен 5 апр 2012
Adult Polyglucosan Body Disease (APBD) is a rare inherited disorder that affects the nervous system. It presents as early as age 35 and progresses relentlessly. People with this condition lose their ability to walk, lose bladder/bowel control, often experience unusual fatigue, and may have problems with cognition. A variety of other functions impacted by the nervous system may also be impacted.
The Adult Polyglucosan Body Disease Research Foundation is dedicated to finding a cure for APBD, while improving the lives of those affected.
The Adult Polyglucosan Body Disease Research Foundation is dedicated to finding a cure for APBD, while improving the lives of those affected.
APBD Patient Chat: The GHF Study, December 18, 2024
APBD Patient Chat: The GHF Study, December 18, 2024
Просмотров: 20
Видео
APBD Patient Chat: Understanding Biomarkers, November 20, 2024
Просмотров 57День назад
APBD Patient Chat: Understanding Biomarkers, November 20, 2024
Closing Remarks by Michael Canmann: 2024 APBD Scientific and Community Conference
Просмотров 353 месяца назад
Closing Remarks by Michael Canmann: 2024 APBD Scientific and Community Conference
Publications to Look Out For: 2024 APBD Scientific and Community Conference
Просмотров 923 месяца назад
Publications to Look Out For: 2024 APBD Scientific and Community Conference
“Next Generation” Researchers Share: 2024 APBD Scientific and Community Conference
Просмотров 1083 месяца назад
“Next Generation” Researchers Share: 2024 APBD Scientific and Community Conference
Patient and Caregiver Panel: What Do We Want Out of a Treatment?
Просмотров 353 месяца назад
2024 APBD Scientific and Community Conference
Up-and-Coming Biomarkers for Neurodegenerative Diseases
Просмотров 3243 месяца назад
2024 APBD Scientific and Community Conference
The Urgent Need for Biomarkers for Clinical Trial Readiness
Просмотров 793 месяца назад
2024 APBD Scientific and Community Conference
Strategies for Advancing APBD and Rare Disease Research - A Conversation with the NIH and the FDA
Просмотров 1713 месяца назад
2024 APBD Scientific and Community Conference
A Caregiver's Perspective on APBD: 2024 APBD Scientific and Community Conference
Просмотров 663 месяца назад
A Caregiver's Perspective on APBD: 2024 APBD Scientific and Community Conference
Welcome Remarks by Natacha Pires: 2024 APBD Scientific and Community Conference
Просмотров 143 месяца назад
Welcome Remarks by Natacha Pires: 2024 APBD Scientific and Community Conference
The Importance of Genetic Screening & Molecular Testing
Просмотров 2473 месяца назад
2024 APBD Scientific and Community Conference
Strategies for Advancing APBD and Allied Diseases Research
Просмотров 1973 месяца назад
2024 APBD Scientific and Community Conference
Developing an Antisense Oligonucleotide Therapy for APBD Patients with the Intronic Mutation
Просмотров 493 месяца назад
2024 APBD Scientific and Community Conference
Developing GHF-201 for Clinical Trials: 2024 APBD Scientific and Community Conference
Просмотров 1293 месяца назад
Developing GHF-201 for Clinical Trials: 2024 APBD Scientific and Community Conference
Emerging Therapies in Development for APBD: 2024 APBD Scientific and Community Conference
Просмотров 4123 месяца назад
Emerging Therapies in Development for APBD: 2024 APBD Scientific and Community Conference
Updates from the Recent Million Dollar Bike Ride Pilot Grant Awardees
Просмотров 973 месяца назад
Updates from the Recent Million Dollar Bike Ride Pilot Grant Awardees
A Patient's Lived Experience: 2024 APBD Scientific and Community Conference
Просмотров 643 месяца назад
A Patient's Lived Experience: 2024 APBD Scientific and Community Conference
Welcome Remarks by Jeff Levenson: 2024 APBD Scientific and Community Conference
Просмотров 1033 месяца назад
Welcome Remarks by Jeff Levenson: 2024 APBD Scientific and Community Conference
"Life Through a Lens" Documentary Trailer
Просмотров 385 месяцев назад
"Life Through a Lens" Documentary Trailer
What's Needed to Better Understand APBD and GSD IV - Natural History Study
Просмотров 277 месяцев назад
What's Needed to Better Understand APBD and GSD IV - Natural History Study
APBD/GSD IV Clinical Practice Guideline
Просмотров 257 месяцев назад
APBD/GSD IV Clinical Practice Guideline
How Many People Live with GSD IV and APBD - A Global Genetic Prevalence Study
Просмотров 327 месяцев назад
How Many People Live with GSD IV and APBD - A Global Genetic Prevalence Study
Speech and Swallowing Disorders in APBD, Patient Chat April 24, 2024
Просмотров 1108 месяцев назад
Speech and Swallowing Disorders in APBD, Patient Chat April 24, 2024
Patient Chat: Topic: APBD Genetics: Genes, Enzymes, and Research, Oh my! (December 13, 2023)
Просмотров 111Год назад
Patient Chat: Topic: APBD Genetics: Genes, Enzymes, and Research, Oh my! (December 13, 2023)
How Physiotherapy Can Help Mitigate APBD Symptoms (June 28, 2023)
Просмотров 184Год назад
How Physiotherapy Can Help Mitigate APBD Symptoms (June 28, 2023)
Appreciate the detailed breakdown! A bit off-topic, but I wanted to ask: My OKX wallet holds some USDT, and I have the seed phrase. (alarm fetch churn bridge exercise tape speak race clerk couch crater letter). Could you explain how to move them to Binance?
Decidí investigar un poco sobre cómo puedo deshacerme del virus del herpes y encontré un canal que hablaba sobre una solución permanente para el herpes y contacté al Dr. Erayo en su canal y finalmente me curó con sus hierbas. 🆗🆗 #DRERAYOHERBALHOME
Decidí investigar un poco sobre cómo puedo deshacerme del virus del herpes y encontré un canal que hablaba sobre una solución permanente para el herpes y contacté al Dr. Erayo en su canal y finalmente me curó con sus hierbas. 🆗🆗 #DRERAYOHERBALHOME
formation and wrong phantasy of pork transporter ? no scientific intelligence. take the waste paper basket. the modell is good . but the vidio is worst.
I have a patient like this: - Upper and lower motor neuron symptoms - asymmetric sensorial deficit - symmetric lower limb motor weakness - continous muscular Activity - XII paresis - sphincter disfunction - hearing déficit - Episodic Laryngospasms Could it be this disease?
Please contact us at info@apbdrf.org for assistance. Happy holidays.
Yeah, it must be great to have such an eminent journalist as Glenn Greenwald write a whole article about what a shameless, psychotic liar and propagandist you are.
Alpha (1_4)
Kraaal
thank youu!!
i like it :)
Very good doctor know him for many years
Please help and donate anything you can, anything at all, and it will be matched. This will help so much. I thank you in advance.
Please help and donate anything you can, anything at all, and it will be matched. This will help so much. I thank you in advance.
I recommend high-throughput #GPCR screening service from www.profacgen.com/GPCR-Screening-Service.htm! Their service is professional and high quality, thoroughly validated high-throughput drug screening model, short turn-around time and best price in the market.
Here at the opening reception for my PORTRAITS exhibit at the Edgemar Center for the Arts in Santa Monica, CA on January 18, 2015, Dr. Brent Fogel of UCLA answers questions from attendees, including legendary actor Michael York, himself living with a rare degenerative condition. Audience members were engaged and grateful to be informed.
At the recent opening (January 18, 2015) of my PORTRAITS Photography Exhibit, Dr. Brent Fogel of UCLA, who gave me my definitive diagnosis, was kind enough to speak to attendees about APBD. Here I am, outlining my history leading up to a diagnosis (in 2010, after 7+ years of tests) and introducing Dr. Fogel.
Continuing what was started with the APBD/KINDSIGHT(r) at the 92nd Street Y in New York in the Fall of 2014, I am dedicating my photography exhibits to helping raise awareness about Adult Polyglucosan Body Disease (APBD), and funding toward research for a cure. For further information, please check www.apbdrf.org and/or info@apbdrf.org.
WOWWWWWWWWWWWW!!!!!!!!!!!!! XOXOX THANK YOU!!!!! "RTR" = RONETE TOTALLY ROCKS!
Great job Ronete!!! Thank you!!!
This was very hard. And important. Thank you for being involved and helping us and others by sharing your difficult experience and circumstances.
Dear Sheila I received the seven clips talk with your experience of APBD from Jeffrey Levenson Your APBD story is excellent portrait and well produced. It is a must for every body directly or indirectly involved with the sickness to watch. Unfortunately my wife Dina is in a far advanced stages. We all pray that a medicine will be developed to help. Phillip Adiv Israel
Dear Sheila I received the seven clips talk with your experience of APBD from Jeffrey Levenson Your APBD story is excellent portrait and well produced. It is a must for every body directly or indirectly involved with the sickness to watch. Unfortunately my wife Dina is in a far advanced stages. We all pray that a medicine will be developed to help. Phillip Adiv Israel
Mr. Gregory Weiss shares many gems about life in this video. No one wants to live with a progressive chronic disease but when faced with this health challenge he decided to LIVE fully and give back. Those with able bodies should listen and reflect on what he says.