Blu Genes was the Donor Spotlight earlier in June at @SickKidsVS! ⁣
We’re so thankful to be Donor Spotlight as we increase awareness for Blu Genes and #TaySachs! ⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #SickKids #Toronto ...

The research we are supporting at @sickkidsvs seems almost futuristic. This ground-breaking research may make the dream of finding transformational therapies for inherited diseases like #TaySachs come true. We are so thrilled to have the opportunity to support the advancement of research that could be key to a cure. Link in bio! to read more!
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #research #partner #SickKids #Announcement ...

We are truly grateful for the scientific expertise @sickkidsVS that is investigating novel ways of treating #TaySachs disease through gene editing research. Follow along with us as we try to find a cure for Tay-Sachs. Link in bio to read more and donate. ⁣⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #research #partner #SickKids #Announcement ...

Spread the word!🗣️⁣⁣
Blu Genes is supporting @SickKidsVS in advancing gene therapy research. ⁣⁣
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We would love your support through sharing this post, following along on our journey, and donating at the link in our bio! ⁣⁣
Every message, share, and dollar counts. ⁣⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #research #partner #SickKids #Announcement ...

🔬 ICYMI!: Blu Genes is supporting @SickKidsVS research! Imagine a time in the near future where a rare genetic disease can be cut out of someone’s DNA - and the correct version of that gene pasted back in its place, removing the disease entirely. This research is already in progress at @SickKidsVS, with support from our donors we can help focus this expertise on Tay-Sachs disease to find a treatment with curative potential.⁣⁣
Help us to make this funding a reality by donating today. Link in bio!⁣⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #research #partner #SickKids #Announcement ...

📢 Blu Genes Foundation is proud to announce our support for @sickkidsvs with a research study that will work to correct the #TaySachs disease gene mutation. We are committing $360,000 to launch this research. ⁣
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Lead by Dr. Evgueni Ivakine, our funding will enable his team at SickKids to direct their world class expertise to design and evaluate potentially curative genome editing approaches for Tay-Sachs disease through the application of CRISPR technology.⁣
This is a huge milestone! Please help us support this research initiative at SickKids by making a donation today to keep research moving forward. ⁣
Link in our bio to read more and donate today! ⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #research #partner #SickKids #Announcement #Partnership #Donations #researchstudy #genetherapy #linkinbio #donate #milestone #SickKidsVS ...

BIG news coming soon from Blu Genes! We are excited to announce a new partnership that will make a HUGE difference in our Tay-Sachs research. Stay tuned! 📢⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #research #partner #comingsoon #Announcement #milestones ...

Did you know that each year, about 16 cases of #TaySachs are diagnosed in the United States. It is understood that people of Ashkenazi Jewish heritage (of central and eastern European descent), French-Canadian/Cajun heritage and Irish heritage have also been found to carry the Tay-Sachs gene.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

Other ways that women can screen for the #TaySachs gene is between the 10th and 12th weeks of pregnancy, where they can get a chorionic villus sampling (CVS), in which a small sample of the placenta is drawn into a needle or a small tube for analysis. Between the 15th and 18th weeks of pregnancy, a woman can also have an amniocentesis to test for the Tay-Sachs gene.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

There are ways to test and screen for the #TaySachs gene with a simple blood test. If both the mother and father carry the Tay-Sachs gene, an obstetrician/gynecologist may refer the couple to a genetic counselor for more information.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

Happy Mother’s Day! 🌸 We hope all you Mom’s are getting spoiled today by your loved ones. You deserve it!⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #thanksmom #mothersday #happymothersday #mom ...

There are three forms of #TaySachs - however the classical form of Tay-Sachs disease often occurs during infancy. This is the most common form and is usually fatal during early childhood. There are also juvenile and adult forms of Tay-Sachs disease, but these are more rare. Children with the juvenile form, also called the subacute form, develop symptoms later than those with the infantile form, and they usually live until later in childhood or adolescence.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

Did you know? Healthy babies develop vision, movement, hearing, and other vital functions in part because enzymes clear out fatty protein and other unwanted material that can interfere with growth. An infant with #TaySachs is born without one of those important enzymes, hexosaminidase A (HEXA). So, as those fatty proteins build up in the brain, they impact the baby's sight, hearing, movement, and mental development.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

Chief R&D Officer at Sio Gene Therapies, Gavin Corcoran stated “We are proud to bring the first potentially disease-modifying treatment for GM2 gangliosidosis to the clinic, which is a milestone both for Sio, for patients and for the field of gene therapy… AXO-AAV-GM2 has the potential to change the course of this disease and help affected children attain and retain important neurodevelopmental milestones.” We look forward to the next steps as researchers develop treatment for this disease!
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

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. Please help us in making a difference, and donate today at the link in our bio.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #Donate #MakeADifference ...

Did you know? GM2 gangliosidosis is a set of rare, monogenic neurodegenerative lysosomal storage disorders caused by mutations in the genes that encode the enzyme β-Hexosaminidase A. It can be categorized into 2 diseases, Tay-Sachs disease and Sandhoff disease. Children affected by this suffer from a progressively debilitating disease and reduced life expectancy.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

Dr. Miguel Sena-Esteves & Dr. Heather Gray-Edwards at #UMassMedical have been researching the causes and potential therapies for lysosomal storage diseases such as #TaySachs disease. There have been significant advances in the field including development of the #genetherapy vector used to deliver functioning copies of the defective genes that cause disease. Read more at the link in our bio. ⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

The first patient in Sio Gene Therapies clinical trial for AXO-AAV-GM2 was dosed using an innovative neurosurgical technique. Sio licensed exclusive worldwide rights from #UMassMedicalSchool for the development and commercialization of gene therapy programs, including Tay-Sachs diseases. Read more at the link in our bio.
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #impact #UMassMedical #UMass #ClinicalTrial ...

A clinical trial to evaluate the safety and efficacy of Substrate Reduction Therapy using a drug called miglustat has been conducted for late onset Tay-Sachs. There were some prominent side effects seen and reports of benefits to individual patients with #TaySachs disease treated with miglustat. Read more at the link in our bio. ⁣⁣
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #taysachsstats #impact #positiveimpact #makeadifference #researchers #hexa #missingenzyme ...

Today marks the first day of Spring! 🌸😁 We look forward to brighter and longer days ahead!
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#BluGenesFdn #babies #children #raredisease #taysachsdisease #infant #blugenes #geneticdisorder #infancy #hope #taysachs #showyourrare #rarediseaseawareness #didyouknow #facts #taysachscarriers #taysachsstats #impact #spring ...