In this episode of Open Book, we hear from Brittany Brown, Project Coordinator at CureGRIN Foundation. Brittany started with CureGRIN as a Family Ambassador and continues to move forward with the team and GRI Families to find treatments and one day, a cure! CureGRIN is a foundation founded and run by parents who are committed to improving the lives of people living with GRI Disorders. GRI Disorders are part of a larger family of genetic diseases related to ionotropic glutamate receptors. These receptors play an important role in learning and memory as well as other critical biological functions. CureGRIN and its network of researchers are working closely with families affected by these disorders to identify insights that could benefit all. Website: curegrin.org Facebook: @cureGRIN Instagram: @curegrin_foundation
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Today is Cloves Syndrome Awareness Day, dedicated to raising awareness about this rare and complex genetic disorder. Cloves Syndrome is marked by significant tissue overgrowth, vascular malformations, and other systemic abnormalities that can affect multiple organs. This day aims to educate the public, support affected individuals and families, and promote ongoing research for improved treatments and understanding. By spreading knowledge and fostering community support, we work towards better outcomes for those living with Cloves Syndrome. #ClovesSyndromeAwareness #RareDisease #GeneticDisorders #SupportAndAwareness #CommunitySupport #ResearchForACure #HealthAwareness #VascularMalformations #SupportFamilies #RareDiseaseDay
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Today, we spotlight SATB2-Associated Syndrome (SAS), a rare genetic condition that affects multiple aspects of development and health. SATB2-Associated Syndrome can present with a range of challenges, including developmental delays, intellectual disabilities, speech and language difficulties, and physical anomalies. Awareness and research are critical in improving the lives of those affected and supporting their families. On this Awareness Day, let’s come together to: 🔹 Raise awareness about SATB2-Associated Syndrome and its impact on individuals and families. 🔹 Support ongoing research efforts aimed at better understanding the condition and finding effective treatments. 🔹 Advocate for resources and support systems that can make a difference in the lives of those living with SAS. We extend our gratitude to organizations dedicated to this cause, including the SATB2 Gene Foundation (https://satb2gene.org), which is committed to providing information, resources, and support for families affected by SATB2-Associated Syndrome. By amplifying the voices of those impacted and investing in research and advocacy, we can drive progress and foster a more inclusive and supportive community. #SATB2Awareness #RareDisease #GeneticConditions #HealthEquity #PatientAdvocacy #Research #Support #CommunityImpact Image description: grey and green hearts with text: SATB2 Associated Syndrome Awareness Day | August 22
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Empowering people with neuro respiratory disabilities to get back to living a life they love | Neurological and Respiratory Physiotherapist | Home Visits | Online Courses for Physiotherapists
🌟 SMA Awareness Month: Let's Make a Difference! 🌟 Spinal Muscular Atrophy (SMA) is a genetic disorder that affects the motor neurons in the spinal cord, leading to muscle weakness and atrophy. This month, we are raising awareness about SMA to support those affected and advocate for continued research and treatment advancements. By understanding SMA and spreading the word, we can help improve the quality of life for individuals with this condition and their families. Join us in supporting SMA awareness this month. Share, learn, and advocate for a brighter future for all those impacted by SMA. #SMAAwareness #SMAAwarenessMonth #SpinalMuscularAtrophy #AdvocateForSMA #SupportSMA #GeneticDisorders #HealthcareAwareness #SMACommunity #HopeForACure
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🌍 Today on #WorldNFAwarenessDay, we stand with those affected by Neurofibromatosis, a genetic disorder that often goes unnoticed but impacts lives profoundly. Let's commit to raising awareness, supporting groundbreaking research, and fostering a community of hope and strength. Every voice and every effort counts. 💙 #EndNF #SupportNFResearch #HopeForNF #MAVEvidence #constantiambiosciences
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"🎗️ Today is AMKD Awareness Day! Let's join hands to raise awareness about AMKD (A Rare Genetic Disorder). Together, we can spread knowledge, support affected individuals, and work towards a brighter future. 💙💪 #AMKDAwarenessDay #RareDisease #Support"
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May is Prader Willi Syndrome Awareness Month! Prader-Willi syndrome (PWS) is a variable and complex genetic disorder resulting from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. PWS is diagnosed in 1:15,000 to 1:25,000 newborns each year. PWS is rare and many have not heard of it. There are very few medical specialists familiar with PWS. For resources regarding Prader-Willi Syndrome head over to coalition member the Foundation for Prader-Willi Research at https://www.fpwr.org/ #PraderWilliSyndrome #rare #rise4rare #rarediseasediversity #raiseawareness #zebrastrong
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Rare diseases are a global health challenge. Chromosome 8p is caused by the missing genetic material on the short arm (p) of each cell's chromosome 8. Today, we honor and remember impacted families, raise awareness, and offer insight into this rare genetic condition. Symptoms include developmental delays, congenital heart conditions, epilepsy, and autism. Early genetic testing can help with a diagnosis and is crucial for personalized care. Learn more about our WES/WGS offerings: https://bit.ly/3xR3Oh3 #ThinkBG #BGreat
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This week is Xia-Gibbs Awareness Week. Xia-Gibbs syndrome is a rare genetic neurodevelopmental disorder that affects the way the brain and nervous system function and the way the individual develops. Learn more about Xia-Gibbs and show some support to our friends at Xia-Gibbs Society by visiting buff.ly/3RhMCbv
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Infertility and problems experienced in conceiving a child are more than biological issues – their effects can ripple through the lives of those affected, bringing pain and heartache to many would-be parents ❤️🩹 While this presents a challenge to couples looking to start a family today, the dedicated team at FutureGen Labs are committed to delivering the genetic information you need, to help improve the well-being of your children tomorrow. Our CEO, Adele Kazilsky, discusses the value of genetic data with the Business Report newspaper this week, as a mechanism that can offer parents the support they need with powerfully relevant information - especially for those embarking on their parenthood journey for the very first time🫂 Click on the Business Report link below to read her industry insights, specifically regarding the value of proactive carrier screening to help limit the transfer of avoidable genetic diseases to our children 🇿🇦 #Genetics #CarrierScreening #SouthAfrica #Healthcare #Health #ReproductiveHealth #Innovation #Technology #GeneticDiseases
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