Aspen Grace Brown my (Taz) sister died from tay -sachs. This organisation is trying to cure the awful disease.

ctsf.com

Contact Information

phone number: 216 812- 5855 

email:email CTSF

fax: 216 251-6728 

 

The Cure Tay-Sachs Foundation (CTSF) is a non-profit organization dedicated to funding the research projects that provide HOPE for developing a treatment and/or cure for Tay-Sachs disease. The CTSF was incorporated on June 1, 2007 in the state of Ohio. It was started by the parents of children that are suffering or have suffered from Tay-Sachs disease. A disease with no treatment, no cure, and very little research funding.

ctsf.com

Stem Cell Therapy 

There are basically four types of stem cells: embryonic (very controversial), adult, progenitor, and totipotent. These cells have the potential to create any number of cells in the body (i.e. brain, blood, heart, etc.). The theory is that stem cells can either replace damage or dead cells or be genetically modified to produce whatever the body needs – like Hex-A genes.Add your descriptive paragraph for this page here.

Once the cure is found, the foundation will focus on education and screening. We will spread the word about Tay-Sachs disease and its treatment. We will help to educate people in high risk populations about screening for the Tay-Sachs gene.

As an added bonus, our work may help to advance the research initiatives currently battling other lysosomal disease (like Tay-Sachs) and larger disease families with neurodegenerative affects like Parkinson's, Alzheimer's and MS. The impact of what we do here could impact millions of people down the road.

Once the cure is found, the foundation will focus on education and screening. We will spread the word about Tay-Sachs disease and its treatment. We will help to educate people in high risk populations about screening for the Tay-Sachs gene.

ctsf.com

Taz's sister Aspen Grace Brown 

Cord Blood Transplants

The theory is to create healthy blood, rich in Hex-A, that can transfer the enzyme to the brain cell. In a cord blood transplant the blood in a Tay-Sachs sufferer is destroyed by chemo-therapy. The blood from a saved and unrelated umbilical cord is injected into the body. The cord blood sets up shop in the bone marrow and creates new healthy blood – complete with Hex A. The challenge is getting the new blood across the blood brain barrier fast enough to stop the GM2 accumulation and brain cell death.

Chaperone Therapy

While some Tay-Sachs sufferers do create Hex A – it is mutated and brain cells cannot absorb it. Pharmaceutical companies are developing molecules that can attach to mutated enzymes (sort of like adapters) to help them become absorbed into the lysosomal storage area of a cell. Once inside the cell the chaperone is discarded and the enzyme is able to eliminate waste product. A PYR clinical trial was conducted in 2009 and the results where unimpressive. There is a continuing search for approved compounds that might perform better.ctsf.com

Once the cure is found, the foundation will focus on education and screening. We will spread the word about Tay-Sachs disease and its treatment. We will help to educate people in high risk populations about screening for the Tay-Sachs gene.

As an added bonus, our work may help to advance the research initiatives currently battling other lysosomal disease (like Tay-Sachs) and larger disease families with neurodegenerative affects like Parkinson's, Alzheimer's and MS. The impact of what we do here could impact millions of people down the road.