Maanas Memorial Fund

Funds researchers and their noble work.

We remember it all like it was yesterday. Maanas joined us on July 29, 2003. I was so excited about my baby brother. I planned so many things that we could do together. Maanas was a cute and adorable little boy. He was always smiling and had so much of love for us. Life was good.

When he was a one year old my mom told me that something was wrong with Maanas. He wouldn’t be able to play with me anymore and he would need a lot more help. Nurses began flooding in and out of our home as he grew weaker. I never quite understood why. Back then I was told that his nervous system was not working. I just assumed the doctors would fix everything, but that was not the case.

Now seven years after he finished his battle, I understand how strong he was as he fought Sandhoff disease. It is a rare, genetic, lysosomal storage disorder resulting in the progressive deterioration of the central nervous system and organs.

I hope through this page I can reach out to everyone that was put in my same situation. I want to see a future where every child gets the opportunity to grow up with their sibling. To fight, to tease, and to protect them. I want to be able to remove fear and replace it with confidence, to remove helplessness and replace it with hope, and to remove sorrow and replace it with all the happiness in the world.

I want to give every child what I was essentially robbed of, but at its current state this goal is lofty. Currently, government provided funds are dwindling and researchers require funds in order to find a cure. Together I believe that we can find a solution to this problem. I hope that you can find it in your heart to donate to this fund. The money raised by this page, in honor of Maanas and his strength, will go directly to help researchers at NTSAD continue their noble work, and hopefully soon extend the time a family shares with their child.

For more information please feel free to contact me at:

Research Grant Funded

The Maanas Fund has raised over $21,000. In July, 2015, a Research Initiative Grant was funded in the amount of $10,000. For details on the research visit Maanas Memorial Fund Supports 2015 Research Grant.

Thank you from the bottom of our hearts for your support!

Ways to Give

Credit Card

Click below to make a gift with your credit card.


Click below to make a gift through PayPal.

Mail or Phone

(617) 277-4463

Checks payable to NTSAD.

Mailing Address:
2001 Beacon Street
Suite 204
Boston, MA 02135.

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