About SMA

Informational Booklets

The following booklets about caring for people with SMA are available in pdf format for download.

They are also available in printed format by calling or emailing the office.

Parent to Parent

If you would like support from another parent in similar circumstances, please contact our office so we can match you up. Also, if you are a parent or grandparent who would like to be a peer supporter, please contact us.

Useful Links

Together in SMA

The website, www.togetherinsma.ca, is intended to provide Health Care professionals and patients/caregivers with information about SMA, including disease education, SMA care, and tools to support clinical practice.

Families of SMA (US)

SMA Community Connections www.smacommunity.org – a portal for connecting with other SMA families

Canadian Neuromuscular Disease Registry

Theravive

Online directory for expert resources all over North America.

Facebook pages

If you would like to have your Facebook page listed, please email bettylou@curesma.ca.(Canadian families only please)

www.facebook.com/pages/Families-of-SMA-Canada
SMA Family Camp Group www.facebook.com/groups/263709200411321/
www.facebook.com/bettylou.ross

Other Related Resources

Home Remodelling for People with Disabilities – while is is U.S. information many of the renovation ideas are great
How to build a backup battery system
Service Canada Disability Resources
A guide for helping people with disabilities sleep more comfortably
A comprehensive guide to home adaptations for disabled people
Human Muscular System

Stella: an SMA story

Cashel Gardner: “I am happy to be me”

Books & other resources

These books, videos and resources are recommendations from parents, grandparents and professionals. We hope you can benefit from them. If you have a book you’ve found especially helpful or fun, email Susi at fsmacan@telus.net.

Parenting after the death of a child by Jennifer L Buckle and Stephen J Fleming
The death of a child has a tremendous and overwhelming impact on parents and siblings, completely altering the psychological landscape of the family. In the aftermath of such a tragedy, parents face the challenge of not only dealing with their own grief, but also that of their surviving children. How can someone attempt to cease parenting a deceased child while maintaining this role with his/her other children? Is it possible for a mother or father to effectively deal with feelings of grief and loss while simultaneously helping their surviving children? Parenting After the Death of a Child: A Practitioner’s Guide addresses this complex and daunting dilemma. Following on the heels of a qualitative research study that involved interviewing bereaved parents, both fathers and mothers, Buckle and Fleming have put together several different stories of loss and recovery to create an invaluable resource for clinicians, students, and grieving parents. The authors present the experience of losing a child and its subsequent impact on a family in a novel and effective way, demonstrating the strength and importance of their book for the counseling field.
Miraculous Moments: True Stories Affirming That Life Goes On by Elissa Al-Chokhachy – contains over eighty-eight first hand accounts of after death communication, nearing death awareness and near death experiences. Unexpected communication from deceased loved ones can bring hope and comfort to the dying and the bereaved. The memorable testimonials shared within Miraculous Moments provide invaluable reassurance that love and life are eternal.
Our Children Live On: Miraculous Moments for the Bereaved by Elissa Al-Chokhachy. An IPPY award-winning collection of powerful, true stories that prove our beloved children are with us forever. These heartfelt testimonials from bereaved parents, grandparents, siblings, friends and caregivers demonstrate that love and life are eternal. Anyone who has suffered the unimaginable loss of a loved one—especially a child—will find hope and comfort in these miraculous stories. The vivid dreams, visions, transcendent moments and unmistakable signs of a child’s undying love offer hope and reassurance that all those we love live on.
The Angel with the Golden Glow: A Family’s Journey Through Loss & Healing by Elissa Al-Chokhachy. Inspired by Elissa’s youngest hospice patient. This beautifully illustrated children’s book about an angel’s brief journey to earth was first published by The Penny Bear™ Company, Inc. Its reassuring message that love is eternal whether we are together or apart touches the hearts of many, especially those who have lost a child. The recipient of the silver Benjamin Franklin Award in the category of Metaphysics & Spirituality, The Angel with the Golden Glow serves as a valuable resource for families of the National Tay-Sach’s and Allied Diseases Association, Families of Spinal Muscular Atrophy and SIDS, as well as other supportive organizations for bereaved families.
Zoom!! by Robert Muncsh
Marvelous Mercer by Shea Magale
A very special critter by Mercer Mayer
Too late to die young by Harriet McBryde Johnson
When bad things happen to good people by Harold Kushner
Joni by Joni Eareckson Tada
God made you special – Veggie Tales book
We were gonna have a baby but we had an angel instead by Pat Schwiebert
This Book Is For All Kids, But Especially My Sister Libby. Libby Died. by Jack Simon
Isabelle’s Dream: A Story and Activity Book for a Child’s Grief Journey by Betsy Bottino Arenella
Selection of books for children whcih show people with disabilities in a positive light

Resources about bereavement

www.centering.org/
En français:

Deux petits pas sur le sable mouillé par Anne-dauphine Julliand

Resources for people with disabilities getting into business

https://www.commercialcapitaltraining.com/business-resources/business-ideas/business-ideas-people-disabilities/
Business Ideas For People With Disabilities. According to the United States Census Bureau, roughly 15 percent of people with disabilities have started their own …

LATEST NEWS

Cure SMA Canada speaks out for the rights of Canadians affected by Spinal Muscular Atrophy to access treatment.

Cure SMA Canada speaks out for the rights of Canadians affected by Spinal Muscular Atrophy to access treatment. Please share. All patients affected by SMA in Canada have a need and a right to treatment! Youtube Video

Patient Information Update – Spinraza

Cure SMA Canada – Patient Community Announcement Cure SMA Canada is very happy to announce that the pCPA, provinces and Biogen have FINALLY come to an agreement for the first submission of Nusinersen/Spinraza for review. We are pleased to confirm that all patients with type 1 in all jurisdictions in Canada will be able to…

Back up power supply

Power to go! There are times when all of us want electricity when we are miles from the nearest electrical outlet. Two key components to having power on the go are a mobile digital power inverter and then a battery. Ideally, a deep cell battery will handle the constant drain and recharge that you’re going…

CURE SMA CANADA

103-7134 VEDDER RD.
CHILLIWACK, BC V2R 4G4

TOLL FREE 855.824.1277

BC 604.824.1277

FAX 604.824.1363

QUESTIONS

Please email Susi Vander Wyk at head office

CURESMA@TELUS.NET

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Cure SMA Canada

1 week ago

VERY IMPORTANT INVITATION!

Focus Groups to be held and filmed for push for access for ALL patients.

Dear Cure SMA Canada Members,

As you are aware, Cure SMA Canada has been fighting a long hard battle for access to Spinraza for all of our patients. While we are extremely happy to hear that Quebec has now approved access to treatment for most of it's patients, we know that the same was not the case for the rest of Canada.

Biogen has appealed the response from CADTH to the application for Spinraza. This is extremely concerning for us as we are sure that means it did not encompass all.

What are we going to do about it??
We are going to hold Focus Groups in Toronto, Calgary and Vancouver where we will specifically highlight the needs and experiences of our type 2 and 3 patients to ENSURE that they are heard and accounted for.
These focus groups will be recorded, compiled and submitted to various levels of Government to certify the importance of access to treatment for all.

These groups are important enough for me, as the Executive Director, to request that you make the time available to participate. I cannot stress enough the need for participation.

To be considered for participation in one of these focus groups, please email Susi Vander Wyk at curesma@telus.net at no later than January 12, 2019
RSVP to participate is required and will result in an invitation to attend with details. Non participating members of the SMA community are invited to attend as well, but also must RSVP.

Toronto - January 15, 2019
Intercontinental Toronto Center
225 Front St. West
10:00 am - 2:00 pm
buffet lunch served

Vancouver - January 20, 2019
Holiday in Vancouver Centre
711 West Broadway
9:00am - 1:00pm
buffet lunch served

Calgary - January 27, 2019
Holiday Inn Calgary Airport
1250 McKinnon Dr. NE
10:00am - 2:00pm
buffet lunch served

Focus Groups will consist of approximately 10 individuals per location with questions and answers to direct questions. We will also be inviting media to attend to interview any patients or family members that are willing and able to share their concerns.

Please RSVP ASAP!!

Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada ...

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Cure SMA Canada

4 weeks ago

Déclaration auprès de la collectivité concernant la décision de Québec de rembourser SpinrazaMC (nusinersen) au profit d’une vaste population de patients atteints d’AS dans la province à la suite d’une recommandation de l’Institut national d’excellence en santé et services sociaux (INESSS).

Chers membres de la collectivité de l’AS,

Pour faire suite à votre demande d’un point sur la situation, Biogen Canada a le plaisir de vous informer que le gouvernement du Québec a annoncé hier sa décision d’étendre le remboursement de SPINRAZA à l’échelle provinciale pour inclure les patients présymptomatiques et symptomatiques de tout âge et présentant les types 1, 2 et 3 de l’AS 5q. Cette décision a été prise sur la base d’une recommandation positive de l’INESSS demandant l’élargissement du remboursement de SPINRAZA à une large population de patients atteints d’AS.
Biogen souhaiterait remercier l’INESSS et le gouvernement du Québec pour avoir reconnu l’urgence de traiter les patients atteints de SA et pour avoir tenu compte des solides données cliniques étayant l’efficacité du nusinersen. Biogen a pour mission de changer la vie des patients en mettant au point des traitements contre des maladies neurologiques graves pour lesquelles il existe peu d’options thérapeutiques. Nous sommes ravis d’avoir pu tenir cette promesse à présent que le premier traitement contre l’AS est proposé à une vaste partie de la population de patients québécois atteints de l’AS 5q.
Il s’agit d’une décision absolument fondamentale qui a été rendue possible grâce au soutien constant et au travail assidu de l’ensemble des familles, médecins, chercheurs et autres acteurs de la collectivité de l’AS qui ont milité inlassablement pour la mise au point d’un traitement. Grâce à votre dévouement et votre engagement, une large population de patients québécois de tout âge atteints de l’AS pourront profiter des bienfaits de SPINRAZA, premier et unique traitement actuellement disponible contre l’AS 5q.

Alors que nous célébrons cette victoire au Québec, nous invitons toutes les autres provinces canadiennes à suivre leur exemple. Nous attendons une nouvelle recommandation de l’ACMTS en janvier 2019 en espérant qu’elle confirmera le résultat positif de l’INESSS, ainsi le Canada pourra rejoindre plus de 43 autres pays qui proposent un traitement par SPINRAZA à une vaste population de patients atteints de l’AS. Tous les patients du Canada méritent de profiter du même accès au traitement et nous continuons à poursuivre cet objectif.
Nous savons toutefois que les familles auront encore des questions sur la suite des opérations au Québec et ailleurs au Canada. Nous vous recommandons, comme d’habitude, de consulter votre médecin pour toute question d’ordre médical ou concernant votre programme de soins.
Nous vous remercions pour le soutien que nous recevons continuellement de la collectivité de l’AS dans son ensemble. Nous n’aurions jamais pu atteindre ce moment historique sans vous et vos familles, les médecins, l’INESSS et le gouvernement du Québec. Cette étape décisive représente un nouvel espoir pour les patients, les familles et la collectivité de l’AS au Canda. Notre engagement vis-à-vis de la collectivité de l’AS demeure indéfectible. Nous avons encore beaucoup à faire et nous continuerons à travailler infatigablement pour garantir que l’ensemble des patients canadiens puissent bénéficier au plus vite du traitement par SPINRAZA, à l’instar des patients québécois.
Sincères salutations,
L’équipe de Biogen Canada ...

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Cure SMA Canada

4 weeks ago

Community Statement re: Quebec’s decision to cover Spinraza™ (nusinersen) for a broad population of SMA patients in the province, following a recommendation from the Institut national d'excellence en santé et services sociaux (INESSS).

Dear Members of the SMA Community,

In response to your request for an update, Biogen Canada is pleased to inform you that the Government of Quebec announced yesterday their decision to broaden reimbursement of SPINRAZA in the province, to include pre-symptomatic and symptomatic patients with Type 1, 2 and 3 of all ages with 5q SMA. This decision follows a positive recommendation from INESSS to expand coverage of SPINRAZA to a broad population of SMA patients.
Biogen would like to thank INESSS and the Government of Quebec for recognizing the urgency to treat SMA patients and their robust review of the clinical data of nusinersen. Biogen’s mission is to change patient’s lives by developing medicines for serious neurologic diseases with few treatment options. We are delighted to have been able to deliver on this promise now that the first treatment for SMA has become available for a broad population of Quebec patients with 5q SMA.
This is a life-changing decision which has been made possible by the continued support and hard work of all families, physicians, researchers and many others in the SMA community who have tirelessly advocated for access to treatment. Your dedication and commitment has ensured that a broad population of patients with SMA, in Quebec regardless of age, will have access to SPINRAZA – the first and only treatment currently available for 5q SMA.

And, as we celebrate in Quebec, we look to the rest of the country and encourage all other provinces to follow their lead. A new recommendation from CADTH is expected in January 2019 and we remain hopeful that it will align with the positive result from INESSS, positioning Canada to join over 43 other countries where SPINRAZA is available for a broad population of SMA patients. All SMA patients across Canada deserve this same access to treatment and we continue to work towards this goal.
We know families will still have questions about what happens next in Quebec and elsewhere in Canada. As always, we recommend that you speak with your doctor about your medical questions and care plan.
Thank you for the support we consistently receive from the entire SMA community. We would not have reached this historic moment without you and your families, the physicians, INESSS and the Government of Quebec. This important milestone brings new hope to patients, families and the SMA community in Canada. Our commitment to the SMA community remains steadfast. We still have much work to do and we will continue to work tirelessly to ensure that all patients in Canada who may benefit from SPINRAZA will receive access as quickly as possible, as in Quebec.
Sincerely,
Biogen Canada Team ...

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Cure SMA Canada

4 weeks ago

Positive and not so positive news.

Dear Cure SMA Canada Community Members,

We have been fighting a long time now for access to treatment and have some news!

We are thrilled to confirm that INESSS has approved reimbursement for Quebec's type 1, 2 and 3 patients. There are limitations; for example, vented patients. Please contact your neurologist to discuss your or your child's eligibility and arrange treatment. If you require assistance, please contact SMA360 through Biogen Canada. We are very happy to hear this wonderful news for our Quebec families! Thank you to everyone that assisted to advocate for this successful recommendation!

As for the rest of our Canadian provinces, the Canadian Drug Expert Committee (CDEC) meeting was held and the Common Drug Review report was issued. Unfortunately the report was not as positive as hoped for as Biogen has appealed the decision. This is very concerning for our SMA families. For an appeal to be issued, we know patients were left out. We are dumbfounded! How can patients be left without treatment?!

Our job is not done yet. We will be ensuring our voices and stories will be heard still and again before the Expert Committee meeting which will be held on February 20, 2019. We will be contacting you to rally together. We are very shocked that we are still in the position of requiring to advocate for treatment for this progressive and serious, life threatening disease. We will not give up and we are not able to understand a lack of support from our Canadian government. Our patients need treatment! ALL of our Canadian patients need and have a right to treatment.

We are not giving up, we WILL continue to publicly voice our needs and our growing anger and frustration!
Stay tuned! Our next steps will be focus groups to be held in Vancouver and Toronto in January. We will need type 2 and type 3 patients to participate.

Biogen is committed to continuing treatment for patients that are already accessing treatment through the urgent access program.

We at Cure SMA Canada wish you and your family a very Merry Christmas. We are committed to ensuring all of our patients have the ability to access treatment and vow our dedication to do all we can to make this happen.

Most sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada ...