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
CMHC Accessible Home Information
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

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

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TOLL FREE 855.824.1277

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FAX 604.824.1363

QUESTIONS

Please email Susi Vander Wyk at head office

CURESMA@TELUS.NET

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Cure SMA Canada

2 weeks ago

www.thestar.com/sponsored_sections/2018/06/29/susis-story-one-mothers-fight-for-access.html ...

Susi's story: One mother's fight for access to lifesaving treatment | The Star

thestar.com

This copy is for your personal non-commercial use only. To order presentation-ready copies of Toronto Star content for distribution to colleagues, clients or customers, or inquire about permissions/licensing, please go to: www.TorontoStarReprints.com

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2 weeks ago

www.cbc.ca/news/canada/manitoba/spinal-muscular-atrophy-march-1.4726843 ...

Advocates march to health ministers meeting to demand coverage for new treatment for rare spinal disease | CBC News

cbc.ca

Families and advocates for patients with a rare degenerative disease marched through downtown Winnipeg to the hotel where federal and provincial health ministers have gathered, demanding coverage for a new treatment that costs hundreds of thousands of dollars every year.

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Cure SMA Canada

3 weeks ago

Community update - Biogen Resubmits Application
Dear Cure SMA Canada Community,

We'd like to bring you up to date on some developments of the Spinraza approval process here in Canada.

Due to the lack of compatible agreement between Biogen and the pCPA/provincial governments, Biogen has resubmitted their application with CADTH. This resubmission was necessary because of the need for the provinces to adhere to the drug approval process. Because of the very narrow recommendation from CADTH from the first submission, it put the provinces/pCPA in a position where they would have to override that recommendation or approve the very narrow margin of patients.

We have made a strong impact on the decision makers, we are very sure that the re-submission will result in a broader recommendation from CADTH. And we feel hopeful and confident that the approval process will move more timely than the previous application.

Our ask:
That Canada covers the treatment our most severe patients, the type 1, immediately.
That Biogen offers a wider scope of treatment to patients in their EAP, including type 2 and 3 patients, effective immediately.
That CADTH expedites the recommendation process and returns with a favorable response that encompasses our type 1,2 and 3 patients.

Cure SMA Canada will continue to advocate for the access to treatment for all of our patients. We will continue to support CORD (Canadian Organization for Rare Diseases) to press the Canadian government to implement a Rare Disease Strategy so patients do not have to sit and wait for a life saving and life changing treatment. It is unacceptable that the SMA community has been left waiting, our patients progressing, watching other countries gain access.

Oh Canada!

Cure SMA Canada will be providing patient input on Biogen's new submission. We will be informing you, the community, of the support and input we will need from you to support this submission.

Thank you for your continued support, together we will get what we've all been waiting and hoping for. We must remain vigil and we will!

Sincerely,
Susi Vander Wyk
Executive Director
Cure SMA Canada

Please see below for Biogen's Community Statement

Biogen's Community Statement
Dear Members of the SMA Community

In response to your requests for information, please see below a brief update on the progress towards bringing SPINRAZA (nusinersen) to Canadian patients affected by Spinal Muscular Atrophy (SMA).

On June 29, 2017, Health Canada approved SPINRAZA as the first treatment for SMA. Six months later, in December 2017, recommendations for the public reimbursement of SPINRAZA were released by the Canadian Association of Drugs and Technology in Health (CADTH) and Quebec’s Institut national d'excellence en santé et en services sociaux (INESSS). Although positively reviewed and recommended for a small subset of type 1 patients, these recommendations greatly limit access to care for the population of patients that could benefit from SPINRAZA.

Since the CADTH and INESSS recommendations, Biogen Canada has been involved in discussions with the pan-Canadian Pharmaceutical Alliance (pCPA) aimed at ensuring that patients with SMA have access to SPINRAZA. In support of this goal, Biogen has agreed to re-submit to CADTH and INESSS – requesting reimbursement for 5q SMA in presymptomatic patients and patients with types 1, 2 and 3. The pCPA is actively engaged with Biogen, with the intent to come to an agreement as soon as possible.

Biogen urges CADTH/INESSS to consider ALL of the SPINRAZA data, from both placebo-controlled and open label studies, so as to reach a similar decision as most health authorities around the world that currently recommend SPINRAZA and have agreed to fund its clinical value for a broad population of patients. Thirty seven (37) countries are now funding SPINRAZA based on the same data as that submitted in Canada.

The faster this new review concludes, the sooner Canadian patients will have hope against deterioration from SMA.

Biogen's commitment to the SMA community remains steadfast. There is still much work to do and Biogen will continue to work tirelessly to ensure that all patients who may benefit from Spinraza will receive access as quickly as possible in Canada. We remain committed to transparent and timely communications and will continue to be available to provide any requested updates.

Marina Vasiliou
Managing Director Biogen Canada ...

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Cure SMA Canada shared Cure SMA Canada - Fighting for Treatment's post.

4 weeks ago

Tick Tock, Tick Tock, Tick Tock...
The days turn to weeks, turn to months and a year as the SMA Community continues to wait for access to treatment.

It seems to be the most incredible journey we have all traveled, and where are we now? How is it possible that we have not heard a positive answer from our beloved Canada yet?

Cure SMA Canada has traveled from one end of this country to the other, several times over, spouting our community's message, impressing on our patient's need for access to treatment. We've held the hands of our elected and non elected officials, we've had corridor meetings, we've publicly demanded, we've brought in physicians, families, shared stories, held petitions, held many gatherings and speeches, wrote endless letters and emails. We've shared very personal feelings, we've literally exhausted ourselves with the many attempts to be heard, understood and supported by our government.

What does it take? We've progressed waiting for the treatment, we've lost lives waiting for it. SMA is a life threatening, progressive disease with NO OTHER treatment options. This is a public out cry, we are on our knees now. This fight has brought the SMA community to our knees. We are in stunned devastated shock that our needs have not brought an answer for us yet. We've seen other countries announce, one after the other that they have approved Spinraza. What about Canada? Our Canada? Our heads are hung in shame, our patients progress and we wonder, what is the value of our life to our country?

Canada has not said yes yet, still we wait, still be fight, we haven't given up and if this disease has taught us anything, it is how strong we are as a family, a cross Canada family of people that have all heard the same devastating news of diagnoses, have a daily shot of reality of what this disease steals from us and have had to exercise the deepest patience as we wait for a response from our government. When will we be able to start accessing this proven safe and effective treatment? We call on Canada to step up and save the Spinal Muscular Atrophy patients! A disease where every single day matters should not be forced to wait to access treatment, especially in Canada.

Please join Cure SMA Canada and CORD as we meet in Winnipeg on June 28, 2018, to share with Canada what we are waiting for. We will march together with our voices united. We will continue our quest to bring change, to impact the future of SMA in Canada!

Look us in the eyes and feel what we feel...if only for a fleeting moment, feel our fear, our shock, our devastation and desperation. Do the right thing, Canada. Approve Spinraza for all patients!

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

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Cure SMA Canada

2 months ago

Dear Cure SMA Canada members,
We are providing you with a link to an SMA community statement from Roche about their Olesoxime study.

This is unfortunate news, as many of us were hoping and waiting for this product to come available after the clinical trials were completed.

We will continue to work hard towards supporting research in our fight to find treatments for SMA. Together, we will succeed in our goals.

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

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