About SMA

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


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)

Other Related Resources

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.

See also: Booklets about SMA produced by FSMAC

  • 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

Resources for people with disabilities getting into business


Nova Scotia broadens access to SPINRAZA™ (nusinersen injection)

October 7, 2019 Dear members of the SMA community, As part of our promise and commitment to keep the Canadian SMA community apprised of important milestones regarding SPINRAZA™, we are sharing an update on recent developments regarding reimbursement in the province of Nova Scotia. Effective October 1, 2019, the Government of Nova Scotia has expanded…

Biogen Press Release

Press Release   NURTURE study shows pre-symptomatic Spinal Muscular Atrophy (SMA) infants treated with SPINRAZA™ (nusinersen injection) attained positive results ▪ Treatment with SPINRAZA™ resulted in survival of 100 percent of infants and none requiring permanent ventilation ▪ Recently published outcomes include motor milestones achieved in 100 percent of infants sitting withoutsupport and 88 percent…

Petition for BC, MB, PE, NL, NS Health Ministries Please share this important petition! Imagine what it was like at SMA camp west this year. As we looked around the lunch room, we saw how many of the SMA patients were accessing treatment.  We were all so very happy for them!  To hear stories of…


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Please email Susi Vander Wyk at head office