Alex is having a blast at SMA Camp in Hope, BC! He is filming his adventures, but before leaving wanted to launch his new YOUTUBE page....Take a peek, like and subscribe youtu.be/SzXj2rJwTkQ

"In the #RareDisease world, patients know best". Excellent article by Rick Thompson on getting a rare perspective ow.ly/BP5b309T4GD

#MythoftheWeek: Patients don’t want to see their health information and won’t find the information useful. bit.ly/2nZjZ73

From May 28 to June 3 is the National AccessAbility Week. Sport is for everyone! bit.ly/2s4rqY2 #AccessibleCanada Accessible Canada

I love this event every year. Congratulations to ALS Society of AB and #bettysrun organizers! x.com/anilainyyc/sta…

An international approach to neuromuscular disease InstitutNeuroMyoGène research.uottawa.ca/news/internati… uOttawa | Innovation uOttawa | Faculté de médecine, Faculty of Medicine La France au Canada 🇫🇷 🇪🇺

Excited to be a part of this new partnership! x.com/CAN_NMD/status…

It's SMA Awareness Month!!!

A message from our CEO on the implementation of our strategic plan and the progress we've made to date youtu.be/KQu8Rxf4798

Thank you Jim Dinning @NuvynP Steve Allan Mark Starratt for your stewardship in making this announcement a reality goo.gl/G6TyfY

Happy to be part of a such a diligent process! x.com/MD_Canada/stat…

themighty.com/2017/10/i-pare…

What an amazing group of people! We are proud to support 😀 x.com/lawrencekorngu…

TODAY is Rare Disease Day! How will you #ShowYourRare today in solidarity with rare disease patients all over the world? Get involved: rarediseaseday.org #RareDiseaseDay

Today is #RareDiseaseDay, #DidYouKnow there are more than 160 types of muscular dystrophy? Causes, symptoms, age of onset, severity and progression vary depending on the individual. To learn more, visit muscle.ca #ShowYourRare Rare Disease Day

#CureSMA #RareDiseaseDay2018

Newborn screening update! In Indiana, HB 1017 was passed by the House and Senate, and is awaiting the governor's signature. Ohio and Georgia have also recently made significant progress in adding SMA to their respective panels. Learn more: curesma.org/news/newbornsc…