Maanas Memorial FundMichael2023-09-15T20:22:53+00:00
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 systemThe central nervous system is that part of the nervous system that consists of the brain and spinal cord. The central nervous system (CNS) is one of the two major divisions of the nervous system. The other is the peripheral nervous system (PNS) which is outside the brain and spinal cord. The peripheral nervous system (PNS) connects the central nervous system (CNS) to sensory organs (such as the eye and ear), other organs of the body, muscles, blood vessels and glands. The peripheral nerves include cranial nerves, spinal nerves and roots, and what are called the autonomic nerves that are concerned specifically with the regulation of the heart muscle, the muscles in blood vessel walls, and glands. More 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.
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!
2001 Beacon Street
Boston, MA 02135.
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National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
The content of this website is intended for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis, or treatment.
The National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
Get the latest news from NTSAD about our Community, the research that provides hope, and what is happening in the world of rare disease.
2001 Beacon Street, Suite 204
Boston, MA 02135
(617) 277-4463 firstname.lastname@example.org
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street, Suite 204, Boston, MA 02135
(617) 277-4463 | email@example.com