In 2015 The CATS Foundation was awarded a grant by Jeans for Genes (now known as Gene People) to develop New Diagnosis packs for the Tay-Sachs and Sandhoff community. Working with the community and clinicians, these packs contain four comprehensive booklets for families with a profound understanding of the critical juncture a diagnosis represents in their lives. Recognizing the bewildering array of emotions, questions, and challenges families face upon receiving a diagnosis of a rare genetic disorder like Tay-Sachs and Sandhoff disease, the CATS Foundation sought to provide a holistic support system.
The packs
Through these meticulously crafted booklets, they aim to empower families with knowledge, resources, and emotional guidance, facilitating informed decision-making and fostering resilience. Each booklet is tailored to address distinct aspects of the journey, from medical information and practical advice to emotional well-being and community support. By equipping families with this multifaceted toolkit, The CATS Foundation endeavors to ease the burden of uncertainty and empower families to navigate their unique path with confidence and hope.
Booklet 1 has been developed to detail in language that families can understand what the diseases are.
Rationale
This booklet has been developed to detail what Tay-Sachs and Sandhoff disease are.
Goals
We want newly diagnosed families to learn about the diseases and answer their questions.
Next steps
This booklet should ensure that families have all the information they require to learn about the diseases.
Booklet 2 focuses on supporting a family with a diagnosis and sharing coping strategies that may be used.
Rationale
This booklet was developed to share tried and testing coping strategies to support a new diagnosis.
Goals
We want to ensure that families have access to coping strategies after a diagnosis.
Next steps
Following on from this booklet we want families to feel empowered with information and coping strategies.
Booklet 3 focuses on the impact that a diagnosis has on a family and how it will impact their daily lives.
Rationale
We developed this booklet to detail the practical impact of diagnosis on a family.
Goals
We want families to know the impact Tay-Sachs and Sandhoff will have on their family.
Next steps
Following this booklet we want families to be fully aware of the practical impact of Tay-Sachs and Sandhoff.
Booklet 4 is a resource tool that has been developed to demystify the language and complex terms used after diagnosis.
Rationale
We know that the technical language used can be confusing for families, this booklet is a glossary of terms.
Goals
We want to families to have access to a resource that will help them understand the complex terms used.
Next steps
From this booklet we want families to feel they can understand all the terms used post diagnosis.
