Leading the Fight to treatand cure Tay-Sachs, Canavan and related diseases
The trailer is also available on You Tube - Parenting a Child with Life-Limiting Illness
This film was produced by National Tay-Sachs & Allied Diseases Association (NTSAD) to lessen the feelings of isolation that newly diagnosed families experience and to give them genuine hope that they will survive. The parents featured are coping with the devastating diagnosis of infantile Tay-Sachs, juvenile Tay-Sachs and GM-1, but the issues they discuss are universal to any life-limiting illness. Their comments are deeply personal, unaffected, insightful, and courageous as they share the intimate story of how they coped with their childâ€™s life-limiting diagnosis, tend their marriage, care for their other children, involve friends, engage palliative and hospice care, and make difficult care choices. Even as the perspectives are varied, two themes are common throughout: the importance of connecting with other families and their certainty as parents of their ability to love and care for their children through the entirety of their lives.
It is this intimate portrait of family experiences, emotions and needs that also make this video valuable as an education tool for providers who support these families, including pediatricians and palliative care doctors.The DVD arrives packaged in the Resource Guide. The DVD includes both the Family version and the slightly shorter Professional version. The Resource Guide features glossary of terms, commonly used special equipment as well as discussion questions for using the video in a professional development setting.
Families and professionals are encouraged to share the film with their communities. Check back in September for resources to help you host a screening.
NTSAD is deeply grateful to Genzyme, a Sanofi Company, for the generous Patient Advocacy Leadership Awards Innovation Grant to support this project.
Inspired by this NTSAD film and resource guide, our partners at Global Genes developed a RARE tool-kit for "Parenting a Child with Life-limiting Illness." The tool-kit delves deeper into the resources addressed in the film's accompanying resource guide.
Visit this page on their website for more information.
Family - Online OrdersFamily - Print Order Form
Professional - Print Order Form Professional - Order Online below:
Please contact Kim@ntsad.org to discuss options for sharing the film with your members.
Through a generous grant from Genzyme a Sanofi Company we are delighted to offer the film and resource guide FREE to families coping with any life-limiting diagnosis.
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