We are delighted to announce that The Cure & Action for Tay-Sachs (CATS) Foundation was a winner of the Genzyme Patient Advocacy Leadership (PAL) Awards!

The charity has been awarded a grant of $15, 000 to create an app for smartphones and tablets which is aimed at providing caregivers of individuals with Tay-Sachs and Sandhoff information on the diseases, symptom management and many other subjects.

What is the Genzyme PAL Awards?

This global grant program supports innovative projects by non-profit organizations in disease awareness and education, community mobilization, non-profit development and good governance activities, patient care and support programs. The Genzyme PAL Awards focuses on non-profit organizations that work on behalf of patients living with lysosomal storage disorders (LSDs), a group of rare, inherited disorders which both Tay-Sachs and Sandhoff disease are classed as.

The 2014 Genzyme PAL Award winners

45 patient organizations around the world responded to Genzyme’s PAL Award program, submitting proposals for new and creative activities to support the LSD patient community. Out of 45 applicants, 9 patient organizations were selected by the External Review Committee to receive a PAL Award and proposals were received from patient organizations in 23 countries.

“The proposals this year were the best that we have ever seen since the inception of PAL. It is gratifying to see one of the goals of this program coming to fruition – giving LSD patient organizations a vehicle through which they are able to hone and improve their grant writing skills.” — said Jean Campbell, PAL Committee Member and rare disease advocate.

The successful applicants came from Peru, Japan, Brazil, Australia, Croatia, the Netherlands, the United States, the United Kingdom, and a joint proposal from Canada and the United States.

Our project

Our grant from the The Genzyme PAL Awards will enable The CATS Foundation to create an app for smart phones and tablets called “The eAcademy for Tay-Sachs & Sandhoff”. The app will be designed for caregivers of individuals with Tay-Sachs or Sandhoff disease and ideas for useful topics will be developed in collaboration with the community. The app will include information on seizure management, feeding options, and other critical issues using videos and text which caregivers will have access to via their device.

We would like to say a big thank you to Genzyme for supporting the charity with this project and we are excited to start work on it. We hope to be able to launch the app in 2015 and there will be regular updates on the project posted to our Facebook page. A full press release on our award can be found here.