September 23, 2016 FDA grants accelerated approval to first drug

September 23, 2016
FDA grants accelerated approval to first drug for Duchenne muscular dystrophy
The U.S. Food and Drug Administration approved Exondys 51 (eteplirsen) injection, the first drug approved to treat
patients with Duchenne muscular dystrophy (DMD). Exondys 51 is specifically indicated for patients who have a
confirmed mutation of the dystrophin gene amenable to exon 51 skipping, which affects about 13 percent of the
population with DMD.
Read more at http://www.muscle.ca/research/research-news/
Government of Canada - Consulting with Canadians on planned accessibility legislation –In-person consultations in
our region
The Government of Canada is leading a national consultation process to inform the development of legislation that will
transform how the Government of Canada addresses accessibility. Canadians can participate in the online component of
this national consultation process and share their ideas on how to improve accessibility and the inclusion of Canadians
with disabilities.
In-person consultations are scheduled for
Thursday, October 20th from 4:00 pm to 7:30 pm at Moncton Lion’s Community Centre’s auditorium at 473 St. George
Street in Moncton, NB.
Thursday, November 3rd from 4:00 pm to 7:30 pm at the Hampton Inn, 411 Stavanger Dr. in St. John's, NL.
Thursday, December 8th from 4:00 pm to 7:30 pm at the Charlottetown Murphy’s Community Centre, 200 Richmond St
in Charlottetown, PE.
Friday, December 9th from 4:00 pm to 7:30 pm at the Halifax Canadian Museum of Immigration at Pier 21, Room
Kenneth C. Rowe Hall, 1055 Marginal Rd in Halifax, NS.
For more information visit http://www.esdc.gc.ca/en/consultations/disability/legislation/index.page#h2.35
Gouvernement du Canada - Consulter les Canadiens au sujet d’une loi prévue sur l’accessibilité – Consultations en
personne dans notre région
Le gouvernement du Canada a lancé un processus de consultation national pour orienter l’élaboration d’un projet de loi
qui transformera la manière dont il traite les questions d’accessibilité. Dès aujourd’hui, les Canadiens sont invités à
participer au processus de consultation national en ligne et à faire part de leurs idées sur les moyens d’améliorer
l’accessibilité et de favoriser l’inclusion des Canadiens handicapés.
Des séances de consultation en personne sont prévue pour
Jeudi 20 octobre de 16h 00 à 19h 30 dans l’auditorium du Moncton Lion’s Community Centre situé au 473, rue St.
George à Moncton, NB.
Jeudi 3 novembre de 16h 00 à 19h 30 au Hampton Inn, 411 Stavanger Dr, à St. John's NL.
Jeudi 8 décembre de 16h 00 à 19h 30 au dans l’auditorium du Murphy’s Community Centre situé au 200 rue Richmond à
Charlottetown, PE.
Vendredi 9 décembre de 16h 00 à 19h 30 dans la salle Kenneth C. Rowe Hall du Halifax Canadian Museum of
Immigration à Pier 21 situé au 1055 rue Marginal à Halifax, NS.
Pour plus de renseignements, consultez le site
http://www.edsc.gc.ca/fr/consultations/invalidite/legislation/index.page?&_ga=1.152568497.904244429.1466678518#
h2.35
Mission Matters Report
The Mission Matters report provides a summary of Muscular Dystrophy Canada’s services
activities and impact between April 1st, 2015 and March 31st, 2016. We invite you to read the
report at http://www.muscle.ca/wp-content/uploads/2012/11/MissionMatters2016_E.pdf
Rapport « Notre mission en action »
Le rapport résume nos activités de Dystrophie musculaire Canada en matière de services et
souligne le travail effectué du 1er avril 2015 au 31 mars 2016. Nous vous invitons à lire le
rapport au http://www.muscle.ca/wp-content/uploads/2012/11/MissionMatters2016_F.pdf
Upcoming Webinar - Boundary Setting for Caregivers - Where You End and I
Begin
The webinar will discuss the challenges around setting and sustaining healthy
boundaries and will take place on September 28, 2016 @ 6:30-8:00 pm (PST). To register or for more information visit
https://thecaregivernetwork.ca/event/boundary-setting-caregivers-end-begin/
Simple Relaxation Techniques
Here are a few simple relaxation techniques that can be done in your wheelchair.
http://musculardystrophynews.com/pinterest/2016/09/11/6470/simplerelaxation-techniques
Fundy Chapter – Save the Date
The annual Fundy chapter barbecue and family social is being held on October 22nd at the Interpretation Centre. Check
out their Facebook group for updates.
A Children's Gala in Support of Muscular Dystrophy Canada –
Quispamsis NB
Sunday, November 27th, from 2pm - 4:30pm for ages 3+ at
the Quality Inn and Suites Amsterdam, 114 Millennium Drive,
Quispamsis.
Just in time for the holidays, a magical winter wonderland awaits with Elsa, Anna and Kristoff. For more information
contact Elizabeth Vicidomini at [email protected] or check out their facebook page at
https://www.facebook.com/events/167662223677061/?active_tab=highlights
Lip Sync Battle and Auction 2.0 – Halifax NS
Hosted by CTV's Jayson Baxter with performances by our amazing judgesRouge Fatale and Deva Station! Watch Lip Sync Battlers vie for cash
prizes as they take on the performance of their lives all in support of
families affected by a neuromuscular disorder!
The Battle will be taking place at Casino Nova Scotia on Thursday,
November 10th at 6:30 p.m. Tickets are $25 and can be purchased by
calling 902-429-6322 or email [email protected]
Win a Trip to Iceland!!
Iceland isn’t just a destination, it’s an adventure set in a
country of sharp contrasts. A place where fire and ice coexist. Where dark winters are offset by the summer’s
midnight sun. A country where insular existence has spurred
a rich and vibrant culture. Source: http://www.iceland.is/
Take a chance and contact [email protected] or phone
1-800-884-6322 to get your Atlantic Fall Raffle tickets before
they run out!
For more information visit
http://www.muscle.ca/events/atlantic-fall-raffle/