Blu Genes Foundation
181 Bay Street - Suite 1800 M5J 2T9

The current research that Blu Genes is helping to support at SickKids Foundation consists of therapeutic strategies that have decades to develop to the point of investigation. We are so thrilled to have the opportunity to support this advancement of research. It is truly the reason why we created Blu Genes Foundation.

Velo Blu Pedal for Blu Genes We already can’t wait for next year! #BluGenes

Blu Genes Foundation is joining SickKids Foundation to advance novel ways of treating #TaySachs disease. This ground-breaking research may make the dream of curing inherited diseases like Tay-Sachs come true.

Today marks #DayOfTheGirl! This year’s theme is My Voice, Our Equal Future. As adolescent girls worldwide assert their power as change-makers, today we look to focus on living free from gender-based violence, and lead as a generation of activists accelerating social change. Share stories of inspiring young girls who are leading efforts towards positive social change!

Happy Thanksgiving everyone! We are so grateful for all of the support we have received this year. Enjoy your weekend with your loved ones.

Tay-Sachs is a lysosomal storage disorder that is caused by a mutation in the gene responsible for the vital enzymes called beta Hex-A. The role of these enzymes is to degrade a fatty substance or lipid called GM-2 ganglioside. In the absence of the enzymes, GM-2 accumulates abnormally in cells, especially in the nerve cells, or neurons, of the brain.

Did you know that in 1969, Dr Shintaro Okada and Dr. John S. O’Brien published the discovery of the Hexosaminidase A (HexA) deficiency in Tay-Sachs? Just two years later in 1971, the first Tay-Sachs community screening event took place in Maryland. It is crazy to think we are only 50 years from these inaugural events!

Blu Genes Foundation is committed to offering hope, where currently, there is none. This need is the driving force behind our mission of advancing gene therapy research for rare genetic disorders. #GeneTherapy research takes dedicated time and funding support to bring treatments from bench to bedside. Donate today at to help move this research forward. https://blugenes.org/donate/

The National Tay-Sachs & Allied Disease Association is celebrating their 43rd Annual Family Conference towards the end of April. This virtual conference ensures the ongoing safety of vulnerable individuals and their families. It is so important for families to have a safe space to support and learn from one another, and we are grateful for these conferences that see over 400 registrants! National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) Register today at https://conta.cc/3l3b3rb

We know that Tay-Sachs is a genetic disorder caused by the absence of enzyme HexA. But what IS an enzyme? An enzyme is a complex pipe-like system of membranes that occupies much of the cytoplasm in cells and which contains many of the enzymes which are responsible for the breakdown of metabolic waste into reusable parts.

Did you know? It was thought that only 3% of all human diseases were caused by errors in a single gene (Single-gene disorder). Recently however, research indicates that there are genetic links to conditions such as Parkinson’s, Alzheimer’s, Diabetes, and even types of cancer.

With mutations come conditions associated with them. There are three types of genetic disorders; Chromosomal (where chromosomes are missing), Complex (where there are mutations in more than one gene), and Single-Gene Disorders. Tay-Sachs is considered a single-gene disorder as the mutation affects one gene.

What is a mutation? Mutations are alterations in one’s DNA sequence. They result from changes in the structure of an encoded protein as a DNA sequence is being copied. Mutations can either be inherited from your biological parents, or acquired after birth. Mutations range in size, from a single DNA building block, to a large segment of a chromosome that incorporates multiple genes. They can also have different impacts, from harmful, to beneficial, or have no effect at all.

Though there will be no traditional #NYE parties and ringing in the New Year will look a little different for some of us, we are still grateful to be going into a new year with a fresh start - let’s raise a glass to the brighter days ahead!

From the challenges of 2020, Blu Genes has persevered because of our loyal supporters such as you - who have continued our mission, in advancing gene therapy research for rare disease, starting with #TaySachs. We want to start the new year off by thanking you for your support. This year has shown us how many people care and believe in our cause, and we are profoundly grateful. We will continue to share our message and move forward this year!

Think about making a positive impact and starting off 2021 on the right track. Make a donation to #BluGenesFdn today or look to set up a recurring donation! Share our message or donate at https://blugenes.org/donate/

DID YOU KNOW? About 16 cases of Tay-Sachs are diagnosed in the United States each year. Although people of Ashkenazi Jewish heritage (of central and eastern European descent) are at the highest risk, people of French-Canadian/Cajun heritage and Irish heritage have also been found to have the Tay-Sachs gene. Some people carry the genetic mutation that causes Tay-Sachs, but do not develop the disease.

Happy Holidays and Merry Christmas from the entire #BluGenesFdn Family! We ask that you be safe and thoughtful in who you are able to celebrate with this year. #MerryChristmas

Give better gifts this season! Participate in the year-end charitable giving season with a donation to Blu Genes Foundation, help us find a cure for #TaySachs disease. The holidays can be an opportunity to give gifts of philanthropy that can save and change lives. Donate today at https://blugenes.org/donate/

DID YOU KNOW? #TaySachs has three different categories: infantile, juvenile and late onset. With infantile, babies show symptoms at 3-6 months and will progressively lose their neurological function. Juvenile is rare where symptoms appear later in life - at ages 2 or 3. Late onset is usually not fatal, but can lead to cognitive and physical decline.