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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

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    Hello, my name is Stephanie Shneydman. I am a senior at Watertown High School in Watertown, CT. As a senior requirement for a capstone project, I will be fundraising money in different ways for the National Tay-Sachs and Allied Diseases Association. One way I will be fundraising money will be at my last high school swim meet, which is on October 12 at 5 P.M. I will be selling water bottles for $2 each and all of these donations will go directly to NTSAD. Another way I will be fundraising for this association is through online. I will attach a link on social media and on NTSAD that will direct you to my own page where you are able to directly donate money (if you are unable to attend the swim meet) online.

    A little bit more on the disease and how it relates to me… I had a brother, named Jason, who was born on August 18, 1995 and got diagnosed with Tay-Sachs disease on March 5, 1996. Tay-Sachs disease is a rare inherited disease in which fatty substances, called gangliosides, build up to toxic levels in the child's brain and affect the function of the nerve cells. As the disease progresses, the child loses muscle control. Eventually, this leads to blindness, paralysis and death. Symptoms include loss of motor skills, including turning over, crawling and sitting up. Other symptoms include exaggerated reactions when the baby hears loud noises, seizures, vision and hearing loss, "cherry-red" spots in the eyes, muscle weakness, and movement problems. It is most common in Ashkenazi Jews, which I am one. This disease is very rare, in fact, there are only fewer than 20,000 US cases per year. Although there is no cure for Tay-Sachs, there are ongoing investigations into the different types of genetic mutations in different populations which cause these diseases. This also provides data which can help with early and efficient identification of new patients. It could also provide future predictive measures of the severity of the disease and personalized treatment opportunities. A study is also underway in Canada to investigate the efficacy of an online educational model, which is being shown to individuals of Ashkenazi Jewish descent prior to carrier screening.

    With creating a successful page, I hope to receive donations that will help provide more finance towards current ongoing research for finding a cure towards Tay-Sachs and other allied diseases. The money that will go towards NTSAD will also help all the families that have children that are currently diagnosed with fatal diseases.

    

Please consider making a donation to NTSAD in lieu of gifts for our marriage!

A Night of Fun & Philanthropy
A Benefit for National Tay-Sachs & Allied Diseases Association

Thursday, November 8th

6-9 pm
Royal Sonesta Hotel
40 Edwin Land Blvd
Cambridge, MA

Dinner | Auction | Program

Silent Auction

Take a peek at our Silent Auction Wish List offerings here to purchase and contribute an item!

Sponsorship

Join our generous sponsors here to support NTSAD as we mark our 61st year.

Program Book Ad

Commemorate this landmark celebration of achievement by recognizing your loved one, your family, or your friends, with an ad in the Gala Program book (available on November 8th or by mail!) 
 
Submit your ad with this form online here by October 5, 2018.
 
RSVP online hereDeadline to RSVP is October 29th. 
 

Joining us will be Special Guest Barry Shrage, and Speakers Mandy Ronaldson and Miguel Sena-Esteves, PhD!

Barry Shrage One of America’s foremost Jewish leaders, Barry Shrage served for the past 30 years as president of Combined Jewish Philanthropies of Greater Boston and as a powerful voice on the American Jewish communal scene. He is known in Boston and throughout the world for his tireless support of Jewish education; his promotion of engagement by religious and nonreligious Jews; his commitment to working for social justice at home and abroad alongside others; his strong support of Israel; his bridge-building, outreach and engagement with the non-Jewish community in creative partnerships; and for his boundless energy and creativity.

Mandy Ronaldson - Mandy Ronaldson, and her husband, Jeff, are the parents of four children, Aaron, Emma, Maddy and Mollie.  Maddy and Mollie were both diagnosed two and one-half years ago with juvenile Sandhoff disease.

Miguel Sena-Esteves, PhD Miguel Sena-Esteves, PhD, is an Associate Professor at the University of Massachusetts Medical School in the Department of Neurology. His laboratory is investigating gene therapy approaches for a number of diseases including Tay-Sachs and Sandhoff diseases and GM1 gangliosidosis. Based on exceptional results in animal models and the completion of pre-clinical studies, they are moving towards initiating human clinical trials for Tay-Sachs, Sandhoff, and GM1 diseases.

 

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…

View the embedded image gallery online at:
https://www.ntsad.org/index.php/139-hidden#sigProId65ed49c181

   About Cristian Manuel Fernandez (June 29, 2010- October 14, 2017)

  
    
 
 
 
Cristian Manuel Fernandez was born on June 29, 2010, a seemingly perfect, healthy and beautiful baby boy. God entrusted this precious child to devoted parents Alejandro and Gilda Fernandez.  On March 27, 2012, at almost 2 years old, they received the worst news that any parent can get - that their beloved son had Tay-Sachs Disease which is a devastating degenerative neurological disease that robs children of their ability to move, see and hear.  Life expectancy is normally 4-5 years old, however, Cristian’s amazing strength and perseverance, along with the courage of his parents carried him through a 7 year battle with Tay-Sachs Disease.  Cristian received his angel wings on October 14, 2017.
 
Cristian loved spending time with his family and created many enduring memories. He never missed an opportunity to dress up in costume with his siblings and cousins. He enjoyed bath time with daddy, lullabies and constant cuddles and kisses from his sisters. In the summers he could spend hours relaxing on a playground swing, swimming pool, or simply enjoying the feel of the ocean breeze against his face. Although his lips never uttered a single word, he spoke volumes through his gentle blue eyes. His mommy understood him deeply and he adored her. His daddy was his superhero and unconditional friend. Both were constantly by his side.
 
Cristian touched and inspired the lives of every single person who had the privilege to have known him or even know of him. He made them ALL better people. He brought families closer together and taught us to appreciate each day and each other. He will be dearly missed, but will forever live in our hearts.  Please join us in honoring him by making a donation to help fight Tay-Sachs Disease so that other children do not have to go through what he did.

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