The SMA Resource Guide

Created in partnership with Cure SMA and our Roche SMA Patient Council.

SMA Resource Guide

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.

• Family Guide to SMA Research
• Nutrition Basics – Fostering Health and Growth for SMA
• Breathing Basics – Respiratory Care for children with SMA
• Caring Choices – for families of infants newly diagnosed with SMA Type 1
• The Genetics of SMA
• Understanding SMA

 

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

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.

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

• 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 …