September 23, 2016 FDA grants accelerated approval to first drug
Transcription
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/