Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Care Tips Series: Feeding

This video is a comprehensive review of an intervention that can help your child or loved one when swallowing food becomes too difficult. It is a family choice and there is no right or wrong answer when it comes to making a decision for your child. Patricia Beaudry, RN explains G-Tubes: A to Z with Isaac in this video and we thank her for her time. If you have questions, please feel free to contact Diana Pangonis, Director of Family Services, This email address is being protected from spambots. You need JavaScript enabled to view it..

Download a companion PDF with the highlights of the video here.

Care Tips Series: Physical Therapy & Range of Motion

These videos show the different ways you can work with your child to keep their muscles relaxed, loose and not contracted depending on their age. It can also be a wonderful way to connect with your child through movement and touch. It may be helpful to share this with your care team of therapists for them to perhaps learn something new while working with your child.

Our thanks to Haley Snyder, PT and Mollie, and Lorelei Sandoval and Isaac for giving their time to share their knowledge.

Motion & Massage: Download a companion PDF with the highlights of the video here.

Physical Therapy Tips

Care Tips Series: The Vest

This video is a brief description of a form of respiratory therapy that simulates manual percussive therapy to loosen up secretions in the lungs. It is known as The Vest, Airway Clearance Vest, High Frequency Chest Wall Oscillation, and SmartWay Airway Clearance System, and other names depending on the manufacturer. If you're in need of a vest or having trouble getting one, please contact Diana Pangonis, Director of Family Services This email address is being protected from spambots. You need JavaScript enabled to view it..

Our thanks to Lorelei Sandoval and Eli for demonstrating how this particular piece of equipment can be so helpful as well as a preventative therapy. 

The Tenth Anniversary Jack Kliger Memorial Golf & Tennis Outing

The 10th Annual FORE Jack Memorial Golf & Tennis Outing was a brilliant celebration of Jack Kliger’s legacy—thank you to each and every one of you who played a role!

Hosted by Sam and Benedetta Kliger, the gathering brought together friends, family, colleagues and sponsors for a great day of golf and tennis to raise money for research and family services at NTSAD.

52 golfers and 22 tennis players enjoyed the day and were joined by dozens of others for cocktails and dinner following the sports outing.

The evening program featured Sam and Benedetta welcoming the crowd, a compelling and heartfelt introduction to Jack and his legacy by his sister, Charlie Kliger, and a guest testimonial offered by Michael Richards, NTSAD Board Member.

The Kliger family and their remarkable circle of friends, family, and colleagues together raised almost $110,000 toward vital research and family services at NTSAD!

Our sincere thanks to the Kliger family, each and every participant, and the generous sponsors of the event—thank you!

Please take a look at the people who came together to celebrate Jack’s life and legacy…

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