Blu Genes Foundation (@blugenesfdn) 's Twitter Profile
Blu Genes Foundation

@blugenesfdn

We are raising funds to advance gene therapy and find a cure for genetic disorders - offering hope where currently there is none.

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linkhttps://blugenes.org calendar_today27-03-2018 03:15:33

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Every year, Dr. Evgueni Ivakine attends our Afternoon Tea for Blu and helps educate us on Tay-Sachs Disease, Rare Genetic Disorders, and the research being done on Gene Therapy at @SickKids. We are grateful to have his support and expertise.

Every year, Dr. Evgueni Ivakine attends our Afternoon Tea for Blu and helps educate us on Tay-Sachs Disease, Rare Genetic Disorders, and the research being done on Gene Therapy at @SickKids. We are grateful to have his support and expertise.
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

Many private and public health insurers won’t cover the $4,000-to-$8,000 expense of whole-genome sequencing. Florida now is among eight state Medicaid that programs do. Read more at blugenes.org/blugenes-news-…

Many private and public health insurers won’t cover the $4,000-to-$8,000 expense of whole-genome sequencing. Florida now is among eight state Medicaid that programs do.
Read more at blugenes.org/blugenes-news-…
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

Few hospitalized babies with an undiagnosed illness undergo whole-genome sequencing — a diagnostic tool that allows scientists to quickly identify genetic disorders and guide clinicians’ treatment decisions by analyzing a patient’s complete DNA makeup.

Few hospitalized babies with an undiagnosed illness undergo whole-genome sequencing — a diagnostic tool that allows scientists to quickly identify genetic disorders and guide clinicians’ treatment decisions by analyzing a patient’s complete DNA makeup.
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

Whole-genome sequencing can help sick infants with rare diseases avoid months/years-long worth of tests & hospitalizations without a clear diagnosis. Studies show rapid whole-genome testing may lower health costs by reducing unnecessary hospitalizations, testing, and care.

Whole-genome sequencing can help sick infants with rare diseases avoid months/years-long worth of tests & hospitalizations without a clear diagnosis. Studies show rapid whole-genome testing may lower  health costs by reducing unnecessary hospitalizations, testing, and care.
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How common are genetic disorders? Though individually rare, collectively they affect millions of people worldwide, including many children. According to World Health Organization (WHO), the prevalence of all single-gene disorders at birth is 10 in 1,000.

How common are genetic disorders? Though individually rare, collectively they affect millions of people worldwide, including many children. According to <a href="/WHO/">World Health Organization (WHO)</a>, the prevalence of all single-gene disorders at birth is 10 in 1,000.
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In some cases, only one defective copy of a gene is enough to cause a genetic disorder. These can arise by a spontaneous mutation, but generally they are diseases that don’t show their effects right away.

In some cases, only one defective copy of a gene is enough to cause a genetic disorder. These can arise by a spontaneous mutation, but generally they are diseases that don’t show their effects right away.
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

Blu Genes Foundation was founded 7 years ago - and since then we’ve been able to fund an innovative gene editing research project ongoing at @SickKids, and the fight to find a cure for Tay-Sachs Disease continues. We are proud of the work and progress made so far!

Blu Genes Foundation was founded 7 years ago - and since then we’ve been able to fund an innovative gene editing research project ongoing at @SickKids, and the fight to find a cure for Tay-Sachs Disease continues.
We are proud of the work and progress made so far!
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

In most cases, 2 defective copies of a gene - 1 from each parent - are necessary to cause a genetic disorder in their child. Since each of the parents provides one copy of the gene to a child, there is a 1 in 4 chance that their child would have a disease.

In most cases, 2 defective copies of a gene - 1 from each parent - are necessary to cause a genetic disorder in their child. Since each of the parents provides one copy of the gene to a child, there is a 1 in 4 chance that their child would have a disease.
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

Blu Genes' goal is to support the development of promising treatment options for Tay-Sachs Disease, and to also fund the groundbreaking research that may one day provide options for families living with other rare genetic diseases as well.

Blu Genes' goal is to support the development of promising treatment options for Tay-Sachs Disease, and to also fund the groundbreaking research that may one day provide options for families living with other rare genetic diseases as well.
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

At Blu Genes Foundation, we hope that we can continue to reassure families and show them that there is still hope - and that Blu Genes will keep working to find a cure.

At Blu Genes Foundation, we hope that we can continue to reassure families and show them that there is still hope - and that Blu Genes will keep working to find a cure.
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

We’re kicking off Velo Blu 2024 - Pedal for Blu Genes! A special thank you to our annual Kit Sponsor - Greybrook Realty. 💙 @greybrookrealty

We’re kicking off Velo Blu 2024 - Pedal for Blu Genes! A special thank you to our annual Kit Sponsor - Greybrook Realty. 💙 @greybrookrealty
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

💙VELO BLU 2024 💙 Time to grab your tickets for a beautiful scenic ride in Niagara-on-the-lake on September 13, 2024. Learn more and donate at: blugenes.org/event/velo-blu…

💙VELO BLU 2024 💙
Time to grab your tickets for a beautiful scenic ride in Niagara-on-the-lake on September 13, 2024.
Learn more and donate at: blugenes.org/event/velo-blu…
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

Welcome to Velo Blu 2024 - with our one and only Welcome Sponsor, Cityzen. Thank you for your years of support - we would not be here without you! 💙👏

Welcome to Velo Blu 2024 - with our one and only Welcome Sponsor, <a href="/CityzenGroup/">Cityzen</a>.
Thank you for your years of support - we would not be here without you! 💙👏
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

💙Owens Wright Lawyers is back again supporting Velo Blu 2024 as our Start and Finish Line Sponsor for our riders! 🚲 We are so thankful to have their support year over year!

💙Owens Wright Lawyers is back again supporting Velo Blu 2024 as our Start and Finish Line Sponsor for our riders! 🚲
We are so thankful to have their support year over year!
Blu Genes Foundation (@blugenesfdn) 's Twitter Profile Photo

TMG Builders is our gracious Decor Sponsor this year - helping Velo Blu 2024 look beautiful! Thank you for your support 🙌💙@tmg_builders

TMG Builders is our gracious Decor Sponsor this year - helping Velo Blu 2024 look beautiful! Thank you for your support 🙌💙@tmg_builders