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BOARD OF TRUSTEES

ANIELLO CAVALLARO (QC)

JENNA STEWART (ON)

SARAH CHEUNG (BC)

ANGELA MOSCO (AB)

JANIK DIONNE (NB)

SCIENTIFIC ADVISORY BOARD

click here for more information.

QUESTIONS

Please email Susi Vander Wyk at head office

CURESMA@TELUS.NET

CURE SMA CANADA

103-7134 VEDDER RD
CHILLIWACK, BC V2R 4G4

TOLL FREE 855.824.1277

BC 604.824.1277

FAX 604.824.1363

NATIONAL OFFICE

SUSI VANDER WYK
Executive Director
curesma@telus.net

ROBERT MARKS
Executive Coordinator
sma_can@telus.net

CHAPTERS

BC CHAPTER PRESIDENT

ANNE BELANGER
anne@curesma.ca

QUEBEC CHAPTER PRESIDENTS

ISABELLE BOUDREAULT
isabelle.boudreault@aircanada.ca
AMY LOIGNON
pikoloca@yahoo.ca

ONTARIO CHAPTER PRESIDENTS

Nicole Lamont
nicole@curesma.ca

ALBERTA CHAPTER PRESIDENTS

Justin Palmer
palmertoe@me.com

SASKATCHEWAN REPRESENTATIVE FOR CSMAC

Desiree Parisien
desiree@curesma.ca

Cure SMA Canada

4 weeks ago

Another story for #SMAAwarenessMonth 💜🧡“Hi! I'm Sasha! I am a disabled, 35 year old woman living in Alberta! I'm also a devoted wife and a homeschooling Mama to our son Maks. He is our life-loving spitfire that has forced his father (Mark) and I to see the lighter side of life. I am living with Type 3 Spinal Muscular Atrophy (diagnosed at age 10), my brother Carl has Type 2 SMA, though he lives in Ontario. The province I live in currently doesn't allow me to access any of the approved treatments for this disease due to my age. My subtype discluded me from accessing any existing compassionate access programs. Being disabled isn't a bad thing. We aren't "broken" or "needing to be fixed" or "unworthy" or "a burden". We are just another subset of individuals who make up a large part of this big diverse world. I'm the first to admit that living with this progressive neuromuscular disease isn't easy, but it's all I know. I've been given this one beautiful life to live, so disease be dammed - I'm going to try and enjoy every moment possible. My family and friends watch my abilities change and my muscles weaken. I ask for help more and more for things that I could do perfectly fine a year ago and now, cannot. They keep me grounded, reminding me that life isn't about wether or not I can climb stairs or curl my own hair. How lucky I am to have such a supportive network! My hope is to gain access to treatment someday - to stop the progression of this nasty disease. I hope that all our hard work pays off and our son will get to witness a primary example of how resiliant and powerful this small group of rare disease persons can be. We are on the right track - so on the days in between today and reaching our goal, I'll remember to be kind to this one body I get to have and be grateful to live in this beautiful life my husband and I created together.” ... See MoreSee Less

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Cure SMA Canada

4 weeks ago

In this collaboration, Maylan shares about her life with SMA to Dan Perez in a series of photographs. Follow the link below to learn more about SMA and what life with SMA looks like! 💜🧡 #SMAAwarenessMonth Dan Perez Photographydanperezphotography.com/2021/08/15/living-with-spinal-muscular-atrophy-part-i/ ... See MoreSee Less

Living with Spinal Muscular Atrophy: Maylan's Story (Part I) - Dan Perez Photography

danperezphotography.com

Spinal Muscular Atrophy affects approximately 1 in 11,000 births in the U.S. These photographs illustrate what it's like to live with it...

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Cure SMA Canada

1 month ago

Another family story for #SMAAwarenessMonth 🧡💜 Meet Jenna and Eddie’s family! Here’s their story:Mason was diagnosed with SMA type 3 when he was just shy of two years old (he is now 12). Our family lives on a large horse ranch in Perth, Ontario. Mason and his little brother Casey (age 4) they both love all things outdoors.Mason's diagnosis wasn't an easy one to come by. Many tests, procedures and stay in the hospital for more testing since they couldn't figure out what exactly was wrong with him. Mason walked with an awkward gait which wasn't typical for any child. After getting the diagnosis of SMA I remember (very clearly) asking the doctor what could be done for Mason. What treatments were there? Was there a cure? There was nothing… no treatments… no cure. “We are going to set you up with a neuromuscular team that will see you tomorrow to explain all this to you,” the doctor stated. What a feeling that was… our only child (at the time) being diagnosed with a degenerative disease that we could do nothing about. “The child version of ALS.” It took us a long time to be able to talk about it.Cure SMA Canada is what got us through those grieving stages for sure! They sent us a care package of supplies and information. They made frequent phone calls to check up on us, connected us with other families in the same boat and most importantly gave us hope.Seeing your child have a degenerative disease is almost unbearable for any parent. A disease that once you get used to it, it changes. Deterioration sneaks up slowly. We are super thankful that Mason is now on a treatment to help slow down progression called Spinraza. An injection in his spine every 4 months worth $125,000!! Mason uses a scooter to get around for long distances and at school. He's doing very well.We are still hoping for that magic cure. We will fight alongside Cure SMA Canada and do whatever it takes. We live in an amazing small town who supports us largely. We are beyond grateful.Thank you, Jenna & Eddie ... See MoreSee Less

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Cure SMA Canada

1 month ago

Cure SMA Canada is holding a virtual national conference August 19 - 21! ☀️Registration is OPEN! www.eventbrite.com/e/2021-cure-sma-canada-summer-conference-registration-166399384037Free for SMA community membersFULLY BILINGUAL! Each session will have full interpretation. Enjoy all presenters whether they present in English or FrenchFind the Agenda here: curesma.ca/2021/08/17/august-19-21-2021-virtual-conference-agenda/🎉Amazing Conference door prize!🎉All SMA community registrants will be entered into a draw for each session they attend.One lucky person attending the conference will win the amazing prize of a trip for 2 to the international SMA conference in Anaheim, California, June 2022!✨ THANK YOU TO OUR SPONSORS Cure SMA Canada would like to say a very big thank you to our sponsors: Biogen, Novartis, and Roche!We appreciate their generosity, providing the opportunity for the SMA community to grow in knowledge and support! 🧡💜——Conférence nationale virtuelle sur l'AMS - 19 - 21 août Cure SMA Canada organise une conférence nationale virtuelle du 19 au 21 août ! Ouverture des inscriptions le 13 août 2021 Coût - Gratuit pour les membres de la communauté SMA ENTIÈREMENT BILINGUE ! Chaque session bénéficiera d'une interprétation complète. Profitez de tous les présentateurs, qu'ils présentent en anglais ou en français, en direct ! ***Un prix de présence extraordinaire!!!***Tous les gens de la communauté de l’AS seront inscrits dans un tirage pour chaque séance qu’ils participeront. Une personne chanceuse participant à la conférence gagnera un prix soit une voyage pour 2 à la conférence internationale de l’AS à Anaheim, Californie en juin 2022.Cure SMA Canada tient à remercier chaleureusement ses commanditaires ! Biogen Novartis Roche Nous apprécions leur générosité, qui permet à la communauté SMA d'accroître ses connaissances et son soutien! ... See MoreSee Less

2021 Cure SMA Canada Summer Conference

www.eventbrite.com

2021 Cure SMA Canada Virtual Summer Conference

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Cure SMA Canada

1 month ago

Our first family story for #SMAAwarenessMonth 🧡💜“I am a parent of a child who has lived with SMA Type 2 for almost 12 years. There have been ups and downs as most families can relate to when they are navigating life with a loved one with a rare condition. Sometimes I wonder how we got through the hard times and I know there will be more. I think many of us can write a book about our experiences. I am fortunate to have a wonderful partner to go through this journey with. If there is one thing I could share, it would be to try and find a balance and keep things simple. Easier said than done, I know. Lean on others around you that have gone through similar circumstances, ask for help when they need it, and focus on the blessings that are around us. I try to focus on what makes us happy, on the things we CAN do as a family, and what I can do as a parent to help my children be the best they can be. It’s hard, but so worth it. Being an advocate is something we are forced to do because there are so many people that need to be taught about SMA, so many places that need to be made more accessible, so many organizations/communities that need to learn how to include everyone regardless of age or ability. I feed off my daughters zest for life, learning, and adventuring. She is such a kind soul that loves to help others. She radiates love and she is my fuel. I need to be reminded to take care of me too, which is hard, but necessary. We are now living in a time where there are treatments, newborn screening, and more hope than ever before for those living with SMA in Canada. When we got our daughter’s diagnosis, we were told she would never crawl, never walk, that most children with SMA pass away before they turn four, and we were then given a business card from the doctor with a phone number to a social worker. Our knees were weak, we had tears in our eyes, and we literally could not find a way out of the hospital as our heads are spinning. All the help and support we got was from other families teaching us what we needed to do, helping us, guiding us, so we could give our child a better quality of life. Over the 12 years, we have seen how hard our SMA organizations have worked for us, how much fundraising our families with SMA have done, and now we are witnessing the future of SMA shifting. To me, this is a miracle. The future is brighter now for those being diagnosed AND we must keep working hard and advocating for those who have lived with SMA all their life as they have been the pioneers paving the path. Our family, like so many others, are going down the road we never intended to, never wanted to, but along this road, we have met most incredible, genuine, supportive people, and we have had opportunities to do things we never thought possible and for this, I am grateful.”- Farah Hirji ... See MoreSee Less

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