How Blu Genes is making a difference
There is tremendous research focused on rare genetic disorders being developed by talented researchers whose life’s work is to treat or cure rare genetic diseases and disorders. Their work impacts a small population of people per disease and therefore presents a challenge to secure large grants that would allow their work to progress to a clinical trial and ultimately a treatment option for patients.
Blu Genes was created for this very purpose, “we are raising funds to advance gene therapy and strategically investing our philanthropic resources in world class research.
Our goal is to offer hope to patients and families where currently there is none,” said Sasha Cucuz, Chairman of the Blu Genes Foundation Board.
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Together we can achieve more
The BLU GENES Foundation began because of a personal mission to find a cure for a rare and fatal genetic disorders called Tay-Sachs disease. But we quickly recognized a greater need. Many families are dealing with the impact of having a loved one who is affected by a rare genetic disorder. We know these families don’t care how rare the disease is, and we know they need hope.
As with many genetic disorders, there is currently no cure for Tay-Sachs disease. Although showing great clinical promise, gene therapy research is expensive, and there have been only a few clinical trials. Most of the diseases that are potentially treatable with gene therapy are rare, and they lack visibility and the funding support available for more common diseases.
The BLU GENES Foundation is raising funds to advance gene therapy and find a cure for genetic disorders, beginning with Tay-Sachs disease. We believe in offering hope where currently there is none.
We understand that your choice to support the BLU GENES Foundation may be a deeply personal one and that each donation is a statement of your trust in our Board and Scientific Advisory Committee. We take that trust seriously. We adhere to the following values in all our activities.
Commitment — We are committed to advancing the practice of gene therapy. We believe it offers the best avenue of hope to families affected by rare genetic disorders and certain cancers.
Integrity — We act responsibly with the funds entrusted to our care, and we apply the highest ethical standards to our actions, including our dealings with the researchers whose work we support or may support.
Accountability — We believe in being answerable to our stakeholders. This includes transparency, regular progress reporting, and maintaining proper accounting practices and controls, but it means more. It also means we will stay true to our values of commitment and integrity.