Help is Here

Someone you love has been diagnosed with a disease without a treatment or cure. You don't know what to do. If you've come to this page, we understand you are in the throes of processing a new diagnosis of someone you love. We're so sorry. We know you may have many questions. We know searching for answers, such as in asking Dr. Google, may be overwhelming and only end up leading to more questions and confusion. We are here to help you navigate it all. NTSAD's Family Services Team is here to help you get what you need in this moment in time.

Help us get to know you and your family by completing this form here and we will be in touch with you.

Navigating Clinical Trials

While there are no approved treatments for Canavan, GM1, Sandhoff or Tay-Sachs, there are clinical trials that we hope, if successful, will lead to effective treatments. NTSAD is here to help you sort through the information about the various trials. Today, there are three trials for GM1, one for Canavan, and two for Tay-Sachs and Sandhoff diseases. 

• Learn about the Clinical Trial process here.
• Learn what trials are currently open for recruitment here.

If you have questions, please contact NTSAD's Director of Family Services This email address is being protected from spambots. You need JavaScript enabled to view it..

Care Plan Template

This template can help you consolidate information about your child or loved one to make it easier to share with doctors or if you must visit the emergency room. We consider this a document that can grow and change to accommodate the needs of families. Download  document here (315 KB) .

NTSAD Family Support Group on Facebook

This private, closed group provides nearly 24/7 support for families and is only for immediate family members of someone affected (living or deceased) by Tay-Sachs, Sandhoff, GM-1 and Canavan in all forms. It is a place of no judgement as there is no right or wrong answer or decision in our world of rare diseases. All support and respect. Friends looking to learn more are asked to visit our website, like our Facebook page, follow on Twitter and subscribe on YouTube.  

Benton’s Family Assistance Fund

Ian and Marie Auerbach established Benton's Family Assistance Fund within NTSAD to honor their son, Benton, who passed away from Tay-Sachs in January 2012, at the age of 3. They started this fund to provide financial assistance to families and affected individuals to purchase items and services that promote comfort, ease, and quality of life for their loved ones. Grants from Benton's Family Assistance Fund will aid families and individuals that are otherwise unable to afford these very helpful services. Every family can request up to $500 per year to cover shipping, a piece of equipment or a helpful therapy. Visit www.ntsad.org for more information.

Emma’s Fund for Families 

Emma’s Fund was established to enable families to have memory making opportunities in honor of Emma.  The purpose of the fund is to allow affected families to apply for grants to use towards enrichment activities.  It can be used any way a family feels would be beneficial for creating their memories, such as trips to the zoo, photo shoots, tickets to an event, an overnight in a hotel with a pool, etc.  Anything that your family feels would provide a break from the routine and some fun times with your child is eligible.  We hope all families have the opportunity to make amazing memories. 

The B Brave Foundation

The B Brave Foundation exists to enhance the quality of life for children and adolescents affected by rare fatal neurological disorders by supporting their families, empowering their caregivers, and pursuing a cure. They are based in Ohio and founded by an NTSAD family.

https://www.bbravefoundation.org/

Coop’s Troop Foundation

Kelly and Michael Richards, their family and friends created the foundation, in honor of their son Cooper’s memory, to support the social, economic and medical needs and development of children with life limiting diseases and special needs. As they say, “’Cooper Work’ is doing small things that make a big impact in the lives of courageous children and their families.”

https://coopstroop.org 

Courageous Parents Network (CPN)

COURAGEOUS PARENTS NETWORK empowers and supports parents caring for children with life-threatening illness by using Web and Mobile to: (1) provide parents with coping tools to promote resiliency; (2) bring parents into 24/7 community with each other to lessen isolation; (3) educate medical providers about the psycho-social and emotional needs of these families; (4) promote pediatric palliative care. Our vision is that the family’s journey is one of minimal regret and maximum healing.

www.courageousparentsnetwork.org

EVA'S BUTTERFLY WISHES® FOR RARE CHILDREN

What is the purpose of this program?

Eva's Butterfly Wishes® for Rare Children opened thanks to a donation from the Eva Juneja Foundation®. Eva's parents created the organization to give hope and respite to other families, like theirs, affected by Walker-Warburg Syndrome (WWS). Since its inception, the program has been expanded to support other children and families impacted by rare, life-limiting diagnoses beyond WWS.

In navigating life with a rare and terminally ill child, the Juneja family often felt isolated. In striving to make Eva's short life rich and full, they endeavored to create special experiences with her. That is the purpose of this program -- to give rare diagnosed children their own butterfly wish, an experience designed especially for them that enhances their quality of life.

Download more information pdf here (856 KB) .

Care Tip Videos

This expanding series of videos filmed at the Annual Family Conference cover topics in caring for children with life-limiting illnesses. You can find these videos here.