Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Maanas Memorial Fund

Maanas Datla
Read how
Maanas Memorial Fund
NTSAD Research Initiative



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

Donate by Credit Card

Donate through PayPal

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

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


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


Satya Koneru , $40

Satyakanth Kastury , $50

Satyam Bendapudi , $1030

Seetha Datla , $257.5

Shailaja Akunuru , $100


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

Heringer Fund for Research

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Donations by Mail or Phone:

(617) 277-4463
Checks payable to NTSAD Heringer Fund
2001 Beacon Street, Suite 204
Boston, MA 02135

The Heringer Family Fund for Research has been raising awareness and funds in search of effective treatments and a cure for Tay-Sachs disease by supporting cutting-edge research to help eradicate rare, genetic diseases. 

Tay-Sachs is a rare, genetic disorder caused by the absence of beta-hexosaminidase (HexA) causing various neurological symptoms, impacting speech and mobility. There are three forms of Tay-Sachs: Infantile, Juvenile, and Late Onset Tay-Sachs. It’s most commonly seen in infants and older children, who experience the most severe forms and usually do not live past childhood. Late Onset Tay-Sachs is a progressive form that affects individuals slowly over time, but is not fatal.   

Together, we have raised more than $60,000 for research through NTSAD and your support has made a difference.

  • Patients with Late Onset Tay-Sachs disease are currently participating in a clinical trial at the National Institutes of Health (NIH), at sites in Atlanta, Boston, Los Angeles, and New York, as well as several other countries around the world, for a drug developed by Sanofi Genzyme that hopes to arrest the progression of the disease. It is a multinational, double blind, placebo-controlled study.
  • The Jacob Sheep project supports the research, care, and treatment of a rare breed of sheep, which are born with a natural form of Tay-Sachs. The Jacob Sheep have been treated with gene therapy with viable success.  In other words, the Jacob Sheep, a large animal model for gene therapy trials, have directly led to early-stage planning of a possible AAV clinical trial for Late Onset of Tay-Sachs and Sandhoff (LOTSS) diseases in patients!
  • As of December 2021, there are ten active clinical trials across all four diseases served by NTSAD (Tay-Sachs, Canavan, GM1 Gangliosidosis, and Sandhoff). Research and therapies in these diseases benefit our entire community, and many other allied diseases, such as Alzheimer’s and Parkinson’s.
  • In January 2021 members of NTSAD’s LOTSS Community participated in a “Listening Session” with the Food and Drug Administration (FDA), where patients shared their experiences and recommendations for the FDA’s process to approve and evaluate clinical trials to help accelerate the process, with consideration for specific concerns of the rare disease population.
  • The 4th Annual Late Onset Think Tank held virtually in October fostered collaboration among elite doctors, scientists, and experts in the field of genetics and rare diseases to share information and research developments as well as to generate new ideas and innovation.
  • Finally, NTSAD has hired its first ever Research Director, Valerie Greger, Ph.D. and welcomes Kathleen M. Flynn as the organization’s CEO who succeeds Sue Kahn.

We are grateful to the ongoing generosity of our family and friends, which means so much more to us than words can express.  

Hi Family and Friends, 

I recently learned that I am affected with Late Onset Tay-Sachs. 

I was nervous to share my story because I didn’t want people to look at me differently. However, it’s more important to help raise awareness and be an advocate for this rare disease. It’s crucial to me to speak for others who feel they haven’t been heard, as they are impacted by something beyond their control.  

I realize that this disease is a part of me, but it doesn’t define me. 



Learn more about my personal story featured in Women’s Health Magazine here.

Please Donate Today

Donate by Credit Card

Donate through PayPal

Donations by Mail or Phone:

(617) 277-4463
Checks payable to NTSAD Heringer Fund
2001 Beacon Street, Suite 204
Boston, MA 02135

To set up annual recurring donations, please contact us at (617) 277-4463.

With your help, Tay-Sachs researchers can put in motion clinical trials for treatment and cure. 

Read more about Tay-Sachs here.

Jeffrey Alan and Stanley Gottlieb Memorial Scholarship Fund

The Jeffrey Alan Gottlieb and Stanley N. Gottlieb Memorial Scholarship Funds will make monies available to college-attending healthy siblings of those who are or were affected by Tay-Sachs, Sandhoff, Canavan or an allied disease.

After experiencing both love and loss, Judy Gottlieb has chosen to move forward in her life by showing love. From caring and concern for her own family, she has decided to express concern for other children by generously contributing to their futures.  In May 2005, this mother and grandmother from Somerset, NJ, established two separate memorial college funds at National Tay-Sachs & Allied Diseases Association to honor her youngest son, Jeffrey Alan Gottlieb, who succumbed to Tay-Sachs in 1975, and her husband, Stanley N. Gottlieb, who passed away in 2001.

It is Judy’s intent that the monies be distributed “for use in their college education, i.e., tuition, books, room and board.”


Donate by Credit Card

Donate through PayPal

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.

Marion Yanovsky Research & Education Fund

Marion Yanovsky Research & Education Fund, a restricted fund within NTSAD, was established by NTSAD in honor of Marion Yanovsky's years of selfless dedication to NTSAD's mission to lead the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1 and Sandhoff diseases. This fund is now part of the New York Area Fund to support research, education and the annual family conference.

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Benjamin Baker Family Fund

Photo of Benjamin Baker in 2004The Benjamin Baker Family Fund, a restricted fund within NTSAD, was established by Wendy and Chris Baker in memory of their son, Ben, who lost his battle with Tay-Sachs in 2004.

This fund supports NTSAD's annual family conference as well as other family services programs. The Baker family has also generously supported other special NTSAD projects through the fund.


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