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

Maanas Memorial Fund

Maanas Datla
Maanas Memorial Fund
Supports
NTSAD Research Initiative
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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.

Research Grant Funded

The Maanas Fund has raised over $17,000 to date.  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 5/25/16

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

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

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 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



Events for Maanas

Dance for a Cause

On Sunday June 21, 2015, we honor Maanas Datla in Cincinnati OH

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Maanas Memorial Fund

Maanas Memorial Fund Donors

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