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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Supportive Newsletters (Post Diagnosis)

The time following a diagnosis is often overwhelming, scary and wrought with many questions and emotions for the whole family. Below is a series of curated newsletters to help you throughout the first year and beyond.

Month One
Resources for coping with a life altering diagnosis and finding your philosophy of care.

Download pdf here (374 KB) .

Month Two
Tips for getting organized, obtaining a Medicaid waiver, and coping with the emotional effects of serious illness.

Download pdf here (364 KB) .

Month Three
The value of support and connection.  Families share what they wish they had known sooner.  

Download pdf here (4.50 MB) .

Month Four
Navigating the world of medical equipment and coping with loss of expectations.

Download pdf here (3.01 MB) .

Month Five
Information on hospice, palliative care, and finding your voice.

Download pdf here (3.69 MB) .

Month Six
Resources for seizure management, journaling through anticipatory grief and strategies for memory making.

Download pdf here (3.10 MB) .

Month Seven
Information on respiratory care, and notes on staying present with others in your life.  

Download pdf here (2.27 MB) .

Month Eight
The importance of ongoing physical therapy, care for caregivers, and an adult sibling perspective on identity.  

Download pdf here (4.87 MB) .

Month Nine
A family shares the value of community and resources provided on understanding a DNR form.  

Download pdf here (4.37 MB) .

Month Ten
Advanced planning for final arrangements, meditations and breathwork resources, and a grandparent perspective piece.  

Download pdf here (4.45 MB) .

Month Eleven
Advice for navigating ongoing triggers and a glimpse into what end of life care really looks like.  

Download pdf here (4.78 MB) .

Month Twelve
Guide to navigating and processing enduring trauma as well as a wrap up note from the Family Services Team.  

Download pdf here (3.20 MB) .

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