Read how
Maanas Memorial Fund
supports
NTSAD Research Initiative
More
Raising funds to help NTSAD lead the fight to
treat and cure Sandhoff, Tay-Sachs, GM-1 and Canavan diseases
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: This email address is being protected from spambots. You need JavaScript enabled to view it.
Maanas Memorial Fund
Donations by Mail or Phone:
(617) 277-4463
Checks payable to NTSAD
2001 Beacon Street, Suite 204
Boston, MA 02135
To set up annual recurring donations, please contact us at (617) 277-4463.
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 to our generous donors.
Below donors contributed between 3/24/15 and 1/1/18
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Aaron Larkins , $51.5 Abhi Bansal , $100 Adithi Varma , $200 Ajay Srivatsavai , $100 Amarendra Phadke , $103 Anand Konda , $100 Anil Akula , $100 Anonymous donation , $19 Anonymous donation , $20 Anonymous donation , $25 Anonymous donation , $25 Aparna Anne , $103 Aruna and Madhu Kuruvada , $101 Aruna Madichetti , $103 Aruna Sonti , $51.5 Aryan Varma , $100 Ashika Wijesekera , $51.5 Avani Kondragunta , $50 Avinash Tadwalkar , $103 Balarama Raju , $25 Barbara Bateman , $103 Chandan Murthy , $51.5 Chandra Shekar Panyala , $30 Coin Ananth, $41 Deepak Indrakanti , $50 Deepti Kumar , $10 Dr. Quaislu , $50 Enoch Suhas , $103 Frank Mobley /Immedion LLC, $150 Geetha Rajagopal , $50 Hari M. Tatni , $75 Harini Madugula , $50 Heena Agrawal , $103 Hiral Curries , $21 Indrakanti Chakravarthy , $103 Indrani Bandyopadhyay , $25 Jagadeesh Eleswarpu , $116 Jayashree geddam , $257.5 Jeff Curran , $30 John Lewandowski /Purdue University, $103 Joo Serk Lee /Sogeti, $51.5 Jothi Vadlamani , $51 Kantham & Seshagiri Rao , $20 Kate Zink , $50 Kavitha Reddy , $51 Kavitiha Thumma , $51 Ketan Suri , $103 Ketan Suri , $163 Kishore Kalikiri , $50 Kotesh & Manoja Cherukuri , $100 Krisha Jothi Avanthsa , $50 Lakshman and Aruna Vadlamani , $103 Lakshmi Eleswarpu , $116 Lakshmi Vytla , $103 Madhave Kosuru , $50 Madhavi Cherukuri , $51.5 Manish Kumar , $51.5 Manju Bhargava , $51.5 Manju donation , $35 Manohar Ratna Reddy , $51.5 Margee Clarke , $200 Nageshwar Gouravaram /Smart IMS, $257.5 Narsingh Raj & Jhansi Mamindla , $103 Neelima Mamidipaka , $21 Nitin Pemmaraju , $103 Nitin Pemmaraju , $257.5 Padma Manne , $100 Pantulu Avasarala , $257.5 Partha and Prabha Kopparti , $50 Pradeep Pisharam , $51.5 Prasanna Tummala , $103 Rada Ganapathi , $25 Raghu Mantena , $100 Raj & Vamsi Upendram , $250 Raj Narang , $50 RAJASEKHAR POSA , $257.5 Rajesh & Priti Jha , $125 Rajgopal Chadalavada , $101 Raji Yellamaraju , $25 Raju Kunaparaju , $103 |
Rakesh Jana , $51.5 Ram Nandra , $25 Ram Tirumalaraju , $50 Rama Ganakota , $60 Rama Kunapuli , $50 Ramadevi Ganakota , $60 Ramadurai Ram , $103 Raman Abbu , $151 Raman Sampath , $103 Ramesh and Gayathri Pulapaka , $309 Ramesh Vijayaraghavan , $103 Rao Bheri , $103 Rao Kallakuri , $21 Ravi Ravinuthala , $103 Rayapa Datla , $100 Ria Datla , $257.5 Sadhna Verma, $80 Sai Gundavarpu , $103 Sailaja Vattyam , $100 Saiprasad Udayasree Aradhya Nakka , $101 Sangeetha Gunda , $25 Sanyasi Raju , $30 Sara Uppalapati , $51.5 Sarada Rachakonda , $103 SATISH GAJJALA , $50 Satya Koneru , $40 Satyakanth Kastury , $50 Satyam Bendapudi , $1030 Seetha Datla , $257.5 Shailaja Akunuru , $100 SHARANYA VOJJALA , $103 Shashank Singhal , $50 Shashank Singhal /General Atomics, $50 Shivali Gaba , $50 Shreya and Suraj Krishna , $206 Sitaram & Vasavi Boyinepally , $100 Smitha and Tanvi Mayya , $51.5 Sreenivas Echuri , $101 Sri Mirle , $51 Srikamalini Kallakuri , $25 Srinivas & Deepthi Pendyala , $103 Srinivas Annapantula , $257.5 Srinivas Annapantula , $250 Srinivas Annapantula , $300 Srinivas Balchukuru , $51.5 Srinivas Uppuganti , $51.5 Srinivasa R. Datla , $100 Srinivasan Subramaniam , $100 Srividya Annapantula , $51.5 Sruthi Tenkayala , $103 Subramanya Prasad , $250 Subu Rama , $20 Suganthi Giridharan , $50 Sunil Reddy and Madhavi Are , $50 Surender Reddy , $21 Surender Sharma , $103 Suseel Meghana Bokkasam /Prasanth & Meghana Kallempudi, $100 Swarna Vinod , $100 Swasti Hiremani , $103 Tanuja Singh , $52.53 The Datla Family , $3000 The Gannamraj Family , $101 The Karanam fFmily , $50 The Kolli Family , $100 Umasankar and Mani Jami , $51.5 Usha K. Bayi , $50 Varma Datla , $100 Varma Siravuri , $100 Vasanta Vemuri , $50 Venkata Burada , $51.5 Venkata Ramana Nagesetty , $50 Venkata Somanchi , $103 Venugopal Katamneni , $50 Vibha and Rajesh Kumar , $73.13 Vijay Sadineni , $202 Vijaya & Narayana Chatla , $50 Vima A. Majeti , $101 Vinod kumar , $50 Vivek & Sowmya Datla , $51.5 William R. Timeier , $10 Yoga with Pooja , $51 |