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Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Host a Screening Party

Host a Screening Party!

parenting a child with life threatening illness booklet v2 page 1Caring for a child with a life-limiting illness can feel isolating and even alienating.  And often friends and extended family don't really understand what the family experience is like. This lack of understanding can be a challenge for everyone: for the parents, who want help, support and understanding; for the friends and extended family who want to provide that help and support but don't know how and are afraid of doing or saying the wrong thing.  To help with this, you can host a screening of the NTSAD film, Parenting a Child with Life-Limiting Illness, to give your friends and family a glimpse into your experiences.

Screenings are not intended to be fundraising events but donations are always welcome! The goal of a screening is to spread awareness of the family experience when a child has a terminal diagnosis. Many viewers have said the film helped them to cope and better understand a wide range of issues and health challenges that impact the entire family.
    
Many of the issues and challenges discussed in the film resonated with me and all that I have been dealing with after my husband was diagnosed with Alzheimer's disease.
    
          ~ Volunteer at a Boston screening event

I would have liked to give this film to my extended family, that never seemed to understand what I was going through, and say 'Here, watch this. Then get back to me.'

          ~ Bereaved parent of a child who died from brain tumor.


NTSAD will provide:

  • A copy of the film on DVD with discussion questions
  • Planning guide and personal assistance
  • Informational materials
  • Family Screening Tool-Kit
  • Click   pdf here (429 KB) to download Professional Screening Tool-Kit

 

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