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.

 

Lisa Huus Bursary

Bursary opportunity for BC residents in post secondary education.

The Lisa Huus Memorial Fund was established in 1988 in memory of Lisa Pauline Huus, who was a third-year sociology student at the University of Victoria. The fund was created by Lisa’s family and has been supported by personal donations in memory of Lisa and by fundraising activities undertaken by the Huus family and the Lisa Huus Memorial Fund.

About the Bursary
The Lisa Huus Memorial Fund provides bursaries up to $5000 annually per recipient, to assist persons with disabilities to undertake or continue their post-secondary education for academic credit at the University of Victoria or other accredited post-secondary institutions in British Columbia.

https://islandkidsfirst.com/lisa-huus-bursary

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)

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

LATEST NEWS

Health Canada approves Risdiplam!

Treatment potential for our pediatric and adult patients! Dear Canada’s SMA community, Cure SMA Canada is happy to share that approval has been issued by Health Canada for Risdiplam for SMA patients 2 months of age and older. Risdiplam is an oral treatment from Roche that treats SMA by increasing the SMN levels. The convenience…

Novartis Community Statement – CADTH RECOMMENDATION & ACCESS TO ZOLGENSMA

March 30, 2021   As requested, and as part of our ongoing commitment to keep you informed of important milestones regarding Zolgensma® (onasemnogene abeparvovec), I am writing on behalf of Novartis to let you know that on Friday March 26th, the Canadian Agency for Drugs and Technologies in Health (CADTH) published their recommendation. Zolgensma has…

Media Release

 First baby in Canada identified with SMA using newborn screening: given early treatment, ‘loves to move’ Dec. 2, 2020—OTTAWA— When Newborn Screening Ontario diagnosed spinal muscular atrophy (SMA) in Aidan Deschamps’ bloodspot, he became the first baby in Canada identified with the genetic, neuromuscular condition through a provincial newborn screening program.   Just six days…

CURE SMA CANADA

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QUESTIONS

Please email Susi Vander Wyk at head office

CURESMA@TELUS.NET