Canadian Neuromuscular Diseases Network

The Canadian Neuromuscular Diseases Network is a broad Network of academic and community practice clinical care providers, clinical and basic scientists, industry partners and patient organizations working together to improve the lives of those affected by neuromuscular diseases.

ALS Canada

REMINDER: In two weeks, Dr. David Taylor, VP Research at ALS Canada, will be speaking about how funds from the Ice Bucket Challenge were invested in research and what the expected impact will be.

Please join us for this free webinar on February 28 at 12 p.m. Eastern. Register today: https://register.gotowebinar.com/register/3798517293905638146

twitter.com

CAN on Twitter

NEW workshop connecting neuroscience trainees and neurology/neurosurgery residents, taking place March 22-24 2018. #SavetheDate

twitter.com “Happy 2018! Save the date for our NEW workshop connecting neuroscience trainees and neurology/neurosurgery residents, taking place March 22-24. Keep an eye on our website and the biweekly CANdid Updates for more info https://t.co/RWJMHjr7Dl”

musculardystrophynews.com

Potential Duchenne MD Gene Therapy Approach Seen in Using HAC Vector

A new way of transferring the dystrophin gene — the largest known human gene — into muscle stem cells may be possible using the human artificial chromosome (HAC) vector, a study reports, suggesting it as a potential approach for gene therapy in Duchenne muscular dystrophy (DMD).

musculardystrophynews.com A new way of transferring the large dystrophin gene into muscle stem cells to treat Duchenne patients may be possible via the HAC vector, a study reports.

scotsman.com

Scots scientists make major breakthrough in MND research

A Scottish study provides findings on how motor neurone disease affects the brain

scotsman.com A Scottish study has made a major breakthrough in understanding how motor neurone disease (MND) affects the processes within the brain.

Muscular Dystrophy Canada

On December 16th, 2017, Bri Reynolds, our featured client in our current Holiday campaign, passed away. We are deeply saddened and our thoughts and prayers are with her family at this most difficult time.

Bri and her family graciously shared their story with us in an effort to highlight the work that Muscular Dystrophy Canada does. The Reynolds family had one wish and that was to be together again in their home. With the support of our partners and our donors, their wish came true. We are grateful to be able to work with so many families that are dealing with the realities of living with a neuromuscular disorder.

During this Holiday season, we thank everyone we work with, and for, and remember those that we have lost.

www.cadth.ca

CADTH recommendations on the coverage of Nusinersen for the treatment of SMAhttps://www.cadth.ca/sites/default/files/cdr/complete/SR0525_Spinraza_complete_Dec_22_17.pdf

cadth.ca

myotonic.org

Skin Cancer Risks in DM1 | Myotonic Dystrophy Foundation

Skin Cancer Risks in DM1

myotonic.org Enhanced risk of DM1 patients developing benign and malignant cancers has been identified in recent registry-based studies (UK Myotonic Dystrophy Patient Registry and National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members). Although sample size...

muscle.ca

Independence Through Innovation - Muscular Dystrophy Canada

Promoting independence through innovation #musculardystrophyCanada

muscle.ca Thanks to rapidly evolving technology, particularly in the world of gaming, home automation and environmental aids, assistive devices are more accessible and more useful than ever. They help improve quality of life exponentially for young people with neuromuscular disorders.

twitter.com

Jesse's Journey on Twitter

Join Jesse's Journey for a webinar this evening on how medicines are approved and funded in Canada.

https://twitter.com/Jesses_Journey/status/938105886521704449

twitter.com “If you have questions about how medicines are approved and funded in Canada, join tomorrow's webinar hosted by @DuchenneCanada https://t.co/iGqCUGQg2Q”

Stand for Duchenne Canada

Join us on Wednesday December 6 at 7:00-8:00 PM EST for the first in our free series of advocacy webinars tailored to the needs of the #Duchenne community.

We will start from the beginning with an informative session explaining how drugs are approved and funded in Canada. For more information, go to https://duchennecanada.org/news-events/events/

neuromuscularnetwork.ca

Blog Archives

http://www.neuromuscularnetwork.ca/neuromuscular-now/archives/12-2015

neuromuscularnetwork.ca Neuromuscular disease (NMD) patients are considered to have compromised immune systems and this comes with both a greater risk for influenza infection alongside a greater risk for side effects and...

Ronald McDonald House Charities Canada

#Mardijedonne Merci d'y participer!

Aujourd’hui, c’est #MardiJeDonne! Faites un don pour garder les familles d’enfant malade ensemble. #GarderLesFamillesEnsemble

register.gotowebinar.com

The ALS Treatment Pipeline: A webinar by neurologists for Canadians affected by ALS. November 30, 2017
https://register.gotowebinar.com/register/5705174908089312514

register.gotowebinar.com

Stand for Duchenne Canada

Join us on Wednesday December 6 at 7:00-8:00 PM EST for the first in our free series of advocacy webinars tailored to the needs of the #Duchenne community.

We will start from the beginning with an informative session explaining how drugs are approved and funded in Canada. For more information, go to https://duchennecanada.org/news-events/events/

Stand for Duchenne Canada

Exonics Secures $40M in Financing for Gene Editing Program to Treat Duchenne https://musculardystrophynews.com/2017/11/15/exonics-therapeutics-raises-40-million-in-financing-for-gene-editing-program-to-treat-duchenne/

Stand for Duchenne Canada

Stand for Duchenne Canada recently hosted it’s first advocacy workshop to help #Duchenne patients, families and caregivers understand how and when to engage in advocacy. The workshop detailed strategies on how to advocate to elected officials – directly and through the media – and call attention to the needs of the Duchenne community.

Learn how to get involved! Read our workshop presentations here. https://duchennecanada.org/advocacy/

youtube.com

Our Christmas Miracle | Muscular Dystrophy Canada

Incredible story! Thank you Muscular Dystrophy Canada

Last year, our community came together to beat the odds and reunite a family just in time for the holidays. Please share the inspiring story of the Reynolds ...

twitter.com

MuscularDystrophyCAN on Twitter

Muscular Dystrophy Canada raising awaireness of FSHD... #spreadtheword

twitter.com “FSHD is a rare form of Muscular Dystrophy that affects your face, scapula, and arms. Watch this incredible short documentary to learn more about what it is like to grow up with Facioscapulohumeral Dystrophy. Help raise awareness and RT today! https://t.co/IANE9rDdQh”

15th International Congress on Neuromuscular Diseases

15th International Congress on Neuromuscular Diseases, July 6-10, 2018, Vienna, Austria... Abstract Sublission now open

Abstract Submission is now open!


#ICNMD2018 is looking for your contribution to advance the field of Neuromuscular Diseases and welcomes abstract submissions for poster presentations.

Share your ideas and research. Become a poster abstract presenter at: https://goo.gl/r3RjRH

alsnewstoday.com

What Does ALS Look Like to You? - ALS News Today

https://alsnewstoday.com/2017/11/07/what-does-als-look-like-to-you/

alsnewstoday.com A reader's comment on a photo leads columnist Dagmar Munn to talk about the importance of avoiding stereotypes and keeping a positive outlook with ALS.

Stand for Duchenne Canada

Sarepta Therapeutics and Nationwide Children’s Hospital Announce FDA Clearance of IND for Micro-Dystrophin Gene Therapy Program for the Treatment of Duchenne Muscular Dystrophy

http://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-therapeutics-and-nationwide-childrens-hospital-0

businesswire.com

The New England Journal of Medicine Publishes First Phase 3 Study Results of SPINRAZA® for the Treatment of Spinal Muscular Atrophy

First Phase 3 study results of SPINRAZA for the treatment of SMA published by the New England Journal of Medicine

businesswire.com The New England Journal of Medicine Publishes First Phase 3 Study Results of SPINRAZA® for the Treatment of Spinal Muscular Atrophy

sciencedirect.com

Quantitative Antisense Screening and Optimization for Exon 51 Skipping in Duchenne Muscular Dystrophy - ScienceDirect

Open access for 50 days...https://www.sciencedirect.com/science/article/pii/S1525001617303556#.Wfn6hatVZCs.twitter

sciencedirect.com JavaScript is disabled on your browser. Please enable JavaScript to use all the features on this page.Available online 28 July 2017In Press, Corrected ProofOriginal ArticleQuantitative Antisense Screening and Optimization for Exon 51 Skipping in Duchenne Muscular DystrophyAuthor links open overlay p...

Canadian Neuromuscular Diseases Network

Reminder that abstracts are due tomorrow, October 30th 2017

From Bench to Bedside: Scientific Advances to Application Neuromuscular Symposium. Call for abstracts due October 30, 2017. https://goo.gl/MeRb7s
https://goo.gl/n9o1Eh

[10/27/17]   PTC Therapeutics Community Call, Friday October 27th at 12:00pm EST. Questions can be e-mailed in advance to [email protected]
To join call please dial (877) 303-9216 or (973) 935-8152 Conference ID: 5796459

Stand for Duchenne Canada

Letter from PTC Therapeutics President and CEO in response to FDA's decision on Ataluren

Letter from PTC president and CEO Stuart Peltz to the DMD Community in response to the FDA Complete Response Letter

https://duchennecanada.org/wp-content/uploads/2017/10/Duchenne-Community-Letter-Post-CRL.pdf

community.parentprojectmd.org

The Future of Ataluren: A Hard Day But Still a Path Forward – PPMD Community

The future of Ataluren
http://community.parentprojectmd.org/m/blogpost?id=1187424%3ABlogPost%3A242980

community.parentprojectmd.org Today the FDA issued a Complete Response Letter regarding PTC Therapeutics’ application for ataluren. Today’s news is hard. This decision is disappointing and not the outcome that our community hoped it would be. For more than a decade, our community has supported the development of this therapy. Hu...

neurology.org

A phase 3 randomized placebo-controlled trial of tadalafil for Duchenne muscular dystrophy

A phase 3 RCT shows tadalafil does not slow ambulatory decline in 7- to 14-year-old boys with Duchenne muscular dystrophy

neurology.org Ronald G. Victor, MD has had contracted research with Eli Lilly, Capricor, and Catabasis. He has received travel compensation from Eli Lilly and has only received a personal consulting fee from Eli Lilly to help design/finalize the study protocol. Once the protocol was finalized, Eli Lilly then reim...

musculardystrophynews.com

Animated Film Helps Explain Duchenne Muscular Dystrophy to Kids

Animated video helps explain Duchenne Muscular Dystrophy to kids https://goo.gl/zxNoyi

musculardystrophynews.com In this animated video from the Parent Project Muscular Dystrophy, Tim and Moby talk about Duchenne muscular dystrophy in a way that children of all ages can understand. MORE: Five tips for emotion…

docs.google.com

Call for abstracts form.docx

From Bench to Bedside: Scientific Advances to Application Neuromuscular Symposium. Call for abstracts due October 30, 2017. https://goo.gl/MeRb7s
https://goo.gl/n9o1Eh

docs.google.com

docs.google.com

Formulaire d'appel de conference.docx

Colloque sur les maladies neuromusculaires "De la recherche au quotidien: Les avancées scientifiques et leur application."
Appel de conférences et session d'affichage, date limite le 31 octobre 2017. https://goo.gl/EqKwAV
https://goo.gl/iAxW3V

docs.google.com

gallery.mailchimp.com

From Bench to Bedside: Scientific Advances to Application. Neuromuscular Symposium. Call for Abstracts due 30 October 2017.

gallery.mailchimp.com

ucalgary.ca

Focused ultrasound offers promising alternative to invasive brain surgery

Promising alternative to invasive brain surgery #focusedultrasound

ucalgary.ca Sign up to receive Breaking News bulletins from UToday, delivered to your inbox. Unsubscribe from Breaking News at any time.

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3330 Hospital Drive NW
Calgary, AB
T2N 4N1
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