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NTSAD
Topic of the Week


Tuesday
November 30, 2012
When someone you love dies...you never quite get over it. You just slowly learn how to go on without them. But always keeping them tucked safely in your heart.

            ~ Unknown
 


 Light a Candle 
Sunday, December 9th  

Candle

...that their light may always shine

The holidays are an especially difficult time for the NTSAD Family. The season of celebration and merriment can feel like a slap in the face to families coping with the loss of a child, grandchild or spouse.

 

We invite you to join the Compassionate Friends Worldwide Candle Lighting from the comfort of your home on Sunday, December 9th at 7pm to honor and remember all the sweet angels gone too soon. As candles are lit around the globe at 7pm local time for one hour it creates a 24 hour wave of light and remembrance.   

 

With love in our hearts and tears in our eyes we will light a candle for far too many angels lost to Tay-Sachs, Sandhoff, Canavan, GM-1 and related diseases. In their honor, NTSAD will work vigorously until a cure is found.


2012 Angels

 

Benton Auerbach, son of Marie and Ian, died January 23, 2012.  

He had Tay-Sachs.

 

Darcy Marie Fortson-Tecza, daughter of Brittney Fortson, died February 8, 2012.  

She had Tay-Sachs.

 

Mila Alexandra Vignati, daughter of Nicole and Jonathan, died March 12, 2012.  

She had Tay-Sachs.

 

Camilla Flesler (Belgium), daughter of Valeria, died March 15, 2012.  

She had Juvenile Tay-Sachs

 

Divya Pramar (India), daughter of Gautham, died May 21, 2012.  

She had Tay-Sachs.

 

Barry Nasadowski, son of Paul and Anita, died on May 22, 2012.  

He had Late Onset Tay-Sachs.

 

John 'Talon' Kociemba, grandson of Sharai and Ken Dietz, died on June 1, 2012.  

He had Tay-Sachs.

 

Isabela 'Bela' Roman, daughter of Floribeth and Eduen Roman, died on June 15, 2012. She had Juvenile Tay-Sachs.

 

Valeria Sanchez, daughter of Maria and Mario, died June 30, 2012.  

She had Tay-Sachs.

 

Shirley Webb, wife of Robert Webb, died July 4, 2012.  

She had Late Onset Tay-Sachs.

 

Tommi Knight (Australia), son of Jessica Heard and Robert, died July 9, 2012.  

He had Tay-Sachs.

 

Luiza Genova (Bulgaria), daughter of Lora, died July 15, 2012.  

She had Sandhoff.

 

Zahra Sarfraz (Pakistan), daughter of Sana, died July 20, 2012.  

She had Tay-Sachs.

 

Ashley Ahrens, daughter of Christine and Shawn, died July 31, 2012.  

She had Sandhoff.

 

Sofia 'Pia' Holguin, granddaughter of Regina, died July 31, 2012.  

She had Juvenile Sandhoff.

 

Yerachmiel Schwartzman, son of Nechama, died August 18, 2012.  

He had Tay-Sachs.

 

Don Greenblatt died August, 30, 2012.  

He had Late Onset Tay-Sachs.

 

Jordan Teasta, son of Misty and Rick, died September 30, 2012.  

He had GM-1.

 

Kaleb Ogden, son of Shelly and David, died October 3, 2012.  

He had Sandhoff.

 

Nathan Robaut, son of Lisa and Sebastian, died October 9, 2012.  

He had Juvenile Tay-Sachs.

 



Compassionate Friends poem


National Tay-Sachs & Allied Diseases Association
2001 Beacon Street, #204
Boston, Massachusetts 02135
617.277.4463 * 800.90.NTSAD
Susan Kahn, Executive Director, skahn@ntsad.org
Kim Kubilus, Member Services Director, kim@ntsad.org
Diana Pangonis, Development Manager, diana@ntsad.org
Ingrid Miller, Administrative Assistant, ingrid@ntsad.org

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