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X-ORIGINAL-URL:https://turnersyndromefoundation.org
X-WR-CALDESC:Events for Turner Syndrome Foundation
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DTSTART;TZID=America/New_York:20260109T080000
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DTSTAMP:20260610T222215
CREATED:20260109T230752Z
LAST-MODIFIED:20260109T231111Z
UID:10002872-1767945600-1772384400@turnersyndromefoundation.org
SUMMARY:Join the Turner Syndrome Awareness Crew
DESCRIPTION:Sign Up Form\nSmall actions = Big ripple effects = Meaningful awareness all year long!\nRaising awareness for Turner syndrome doesn’t have to be overwhelming or time-consuming. \nThat’s why we created the Turner Syndrome Awareness Crew — a low-commitment\, high-impact way to help spread awareness in your community\, online\, and beyond all year round. \nWhen many people take simple actions together\, awareness grows farther than any one person could reach alone. \nWhat Is the Awareness Crew?\nThe Turner Syndrome Awareness Crew is a group of supporters who take small\, meaningful actions to help educate others and spark conversations about Turner syndrome. \nThere’s no minimum time requirement\, no pressure to do everything\, and no “right” way to raise awareness. \nWhat Kind of Actions Are We Talking About?\nThink simple and flexible\, yet high-impact: \n\n? Sharing or creating a social media post\n? Dropping off a flyer at a doctor’s office\, school\, or workplace\n?? Signing or sharing a petition\n? Talking with friends\, family\, or coworkers about Turner syndrome\n? Participating in Awareness Month activities\n\nEach action might only take a few minutes\, but when many of us come together to take action\, they create a powerful ripple effect. \n\n\nRaise Awareness and Bring Others Along\nEvery Awareness Crew member will receive a personal fundraising page\, making it easy to invite friends\, family\, and your community to support Turner syndrome awareness alongside you. \nYou don’t need to fundraise actively if you don’t want to. But if you do share your page\, you’re helping amplify awareness and support year-round. \nWhy It Matters\nAwareness leads to: \n\nEarlier diagnoses\nBetter understanding in doctors’ offices\, schools\, and workplaces\nStronger advocacy\nA more informed and compassionate community\n\nWhen many people take small steps\, the impact grows! \nReady to Be Part of the Crew?\nIf you’ve ever wanted to help raise awareness\, but weren’t sure how\, this is your invitation. \n? Join the Turner Syndrome Awareness Crew\n? Take simple actions when it works for you\n? Be part of something bigger than yourself \n? Shop for TSAM New Merch \nSign up today and start making an impact\, one small action at a time! \n\n\n\n\n\n 
URL:https://turnersyndromefoundation.org/event/%f0%9f%8c%9f-join-the-turner-syndrome-awareness-crew-%f0%9f%8c%9f/
LOCATION:Online
CATEGORIES:Awareness,Virtual
ATTACH;FMTTYPE=image/png:https://turnersyndromefoundation.org/wp-content/uploads/2026/01/TSAM-Crew.png
ORGANIZER;CN="Turner Syndrome Foundation":MAILTO:info@tsfusa.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260107
DTEND;VALUE=DATE:20260201
DTSTAMP:20260610T222215
CREATED:20260107T214913Z
LAST-MODIFIED:20260107T214913Z
UID:10002870-1767744000-1769903999@turnersyndromefoundation.org
SUMMARY:Study Opportunity
DESCRIPTION:Virtual Social Skills Group
URL:https://turnersyndromefoundation.org/event/study-opportunity/
LOCATION:Online
ATTACH;FMTTYPE=image/png:https://turnersyndromefoundation.org/wp-content/uploads/2026/01/unnamed.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251024T200000
DTEND;TZID=America/New_York:20251024T220000
DTSTAMP:20260610T222215
CREATED:20251021T222535Z
LAST-MODIFIED:20251021T222535Z
UID:10002852-1761336000-1761343200@turnersyndromefoundation.org
SUMMARY:Star Sister's Costume Party
DESCRIPTION:Star Sisters Monthly Meet-Up Event  \nBe a Star Sister – Meet Others – Get Involved!\nSign Up Now\nA virtual meet-up and private Facebook group for the Turner syndrome community is offered exclusively to girls\, women\, and their parents or guardians. Learn from experts\, people with experience\, life coaches & learn from one another! Join today and shine! \nSign up once to receive the virtual meet-up link\, invitation to the private group\, and meeting reminders\, too! Are you an all-star and have something to share with this community? Volunteers interested in speaking\, writing\, or conducting group discussions are encouraged to register and share their interests. \nIf you have any questions\, email Nicole at ntopp@tsfusa.org \nPolicy and disclaimer- To be a Star Sister\, they must have TS or be a parent or guardian of a minor child with TS. All are asked to abide by simple privacy\, kindness\, and decency rules. TSF reserves the right to remove anyone from the group at will. All are urged to proceed with personal responsibility and caution\, as TSF is not responsible for any discussions or actions of others at any time\, including those of group leaders or presenters. Thank you.
URL:https://turnersyndromefoundation.org/event/star-sisters-costume-party/
LOCATION:Online
ATTACH;FMTTYPE=image/jpeg:https://turnersyndromefoundation.org/wp-content/uploads/2025/10/Star-Sister-Costume.jpg
ORGANIZER;CN="Turner Syndrome Foundation":MAILTO:info@tsfusa.org
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DTSTART;TZID=America/New_York:20251008T200000
DTEND;TZID=America/New_York:20251008T210000
DTSTAMP:20260610T222215
CREATED:20250425T220833Z
LAST-MODIFIED:20250820T141954Z
UID:10002173-1759953600-1759957200@turnersyndromefoundation.org
SUMMARY:Webinar Prenatal Monosomy X: What a Genetic Counselor Wants You to Know
DESCRIPTION:Register Now for This Webinar\nThis is a We Learn education activity presented by an expert in their field as part of the programming of the Turner Syndrome Foundation. Donations help our mission continue to develop and provide programs that support the TS community. Show your commitment to the cause – become a 1938 Sustaining Supporter. \nThe event will be rescheduled. The date will be determined. Signup to receive event notifications\, link\, and recording. \n\n  \nShort overview of the topic: \nThis presentation will focus on prenatal monosomy X from a clinical genetic counseling perspective. Topics covered will be current prenatal screening and diagnostic testing\, impact on prenatal care\, and resources for expectant parents.\nRegister Now for This Webinar \nShort overview of the topic: \nThis presentation will focus on prenatal monosomy X from a clinical genetic counseling perspective. Topics covered will be current prenatal screening and diagnostic testing\, impact on prenatal care\, and resources for expectant parents. \nWhat You Will Learn: \nI am a clinical prenatal genetic counselor. In my clinical practice I routinely care for patients who are carrying a pregnancy with a suspected or known prenatal diagnosis of monosomy X. I have also provided preconception counseling to patients who have mosaic or full Turner syndrome. Participants should have a better understanding of the benefits and limitations of current prenatal screening for monosomy X and the importance of additional clinical follow-up for positive screens. Participants will also learn about the wide clinical spectrum of monosomy X in the prenatal period. There continues to be broad misconceptions about the accuracy\, benefits\, and limitations of current prenatal screening\, and this talk will touch on many of these. Additionally\, every couple has a chance to have a child or pregnancy with TS\, so this information is relevant to any person considering having a child. Finally\, a cursory google search about prenatal turner syndrome or monosomy X often yields inaccurate information\, leading the general population to often have misconceptions about the prenatal features of TS. \nWho Should Attend:\nIndividuals\, allied health professionals\, educators\, administrators\, and policymakers are encouraged to attend. \nAbout the Presenter: \nEmily Green\, Masters of Genetic Counseling\, 2021 PhD in Cellular and Molecular Biology\, 2019 Masters of Cellular and Molecular Biology\, 2016 Certified Genetic Counselor\, 2022 \nI am a clinical genetic counselor specializing in prenatal and reproductive genetics at the University of Washington. I primarily see patients referred to our high-risk prenatal clinic\, though I also see patients for preconception counseling before or after pregnancy. I routinely see patients who have had abnormal noninvasive prenatal screening and/or abnormal ultrasound findings\, including cases of potential monosomy X. I am passionate about providing information and support to all my patients\, particularly those who experience an unexpected diagnosis during pregnancy. I am also a mentor and clinical supervisor for University of Washington genetic counseling students. \nI was raised in the Pacific Northwest and grew up with a passion for biology. This led me to pursue undergraduate studies at Western Washington University. While at Western I also continued studies in French\, which led me to a Masters and PhD in cellular and Molecular biology in Strasbourg\, France\, where I focused primarily on developing strategies to block malaria transmission by mosquitoes. A desire to move away from research and into applied work led me to genetic counseling\, which merges my interest in genetics with my desire to work with people and support patients. I graduated from the University of Arizona genetic counseling program in 2019 and since that time have been working at the University of Washington Medical Center. Outside of my clinical work\, I enjoy all the outdoor activities Washington has to offer\, as well as social dancing and knitting. \nPlease Donate!\nIt is free to register. We ask you to please donate\, if you can\, to support our work in providing enriching education programs for all. Your donation today helps to make programs like this one readily available to anyone virtually anywhere in the world. \nDonations and sponsorships make learning events such as this WE LEARN webinar activity to be provided freely and accessible to everyone. Show your commitment to the cause – become a 1938 Sustaining Supporter.
URL:https://turnersyndromefoundation.org/event/webinar-prenatal-monosomy-x-what-a-genetic-counselor-wants-you-to-know/
LOCATION:Online
CATEGORIES:Virtual
ATTACH;FMTTYPE=image/jpeg:https://turnersyndromefoundation.org/wp-content/uploads/2025/04/Prenatal-Monosomy-X-What-a-Genetic-Counselor-Wants-You-to-Know.jpg
ORGANIZER;CN="Turner Syndrome Foundation":MAILTO:info@tsfusa.org
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DTSTART;TZID=America/New_York:20250918T200000
DTEND;TZID=America/New_York:20250918T210000
DTSTAMP:20260610T222215
CREATED:20250822T162507Z
LAST-MODIFIED:20250822T165754Z
UID:10002850-1758225600-1758229200@turnersyndromefoundation.org
SUMMARY:Living With Turner Syndrome: Caring For Your Heart and Blood Vessels
DESCRIPTION:Cardiovascular health is an important topic for the TS community as several concerns are more common in TS than in the general population. In this webinar\, Dr. Prakash provides an overview of these concerns and the care guidelines to ensure early detection. After reviewing congenital heart and blood vessel problems that are more common in people with Turner syndrome\, Dr. Prakash will discuss recommendations for screening and treatment of cardiovascular disease. Aortic dissection and heart disease affect many people who do not have TS. The principles in this presentation apply to many people in the non-TS general population who are living with heart and blood vessel conditions.\n \nTopic Overview:  \nWhat is aortic dissection\, and why is it something that the TS community needs to be aware of?\nWhat can patients do to be proactive about their heart health?\nWhat monitoring and evaluations are recommended in the Clinical Care Guidelines?\nWhat should be in an emergency action plan for people with TS?\nIf an aortic dissection does take place\, what are the next steps for intervention?\nHow can patients can support TS/aortic dissection research? \nWho Should Attend:\nPatients\, caregivers\, allied health professionals\, clinical researchers\, health administration\, policymakers\, philanthropists \nWebinar Link:\nCheck the email you provided to receive the webinar link. \nCost:\nFree. Donations are appreciated. \nAbout the Presenter: \nDr. Prakash is Professor of Internal Medicine at the University of Texas Health Science Center at Houston. He is the co-director of the Turner Syndrome Adult Comprehensive Care Center\, directs the aortopathy clinic\, and conducts collaborative research on bicuspid aortic valve and Turner syndrome. \nDegree & Certifications:\nMD\, PhD Adult Congenital Heart Disease Adult Cardiovascular Disease Internal Medicine Echocardiography \nSpecialty & Area of Focus:\nSiddharth Prakash has a Ph.D. in Molecular and Human Genetics from Baylor College of Medicine\, where he also completed his residency in Internal Medicine and a fellowship in Cardiovascular Disease. He is board certified in cardiology\, echocardiography\, and adult congenital heart disease. Since 2011\, Dr. Prakash has worked as the cardiologist in the Multidisciplinary Aortic and Vascular Disease Clinic at McGovern Medical School\, a part of the University of Texas Health Science Center at Houston\, where he specializes in medical therapy\, imaging\, and surveillance of patients with heritable aortic and vascular diseases. He is Professor of Internal Medicine and is co-director of the Turner Syndrome Adult Comprehensive Care Center\, a multispecialty clinic that sees Turner syndrome patients from across the southwest region. He leads the national Turner Syndrome Research Registry and is chair of the Scientific Advisory Board of the Turner Syndrome Society of the United States. He also co-chairs the Collaborative Clinical Science working group of the GenTAC Alliance and is an investigator with the Montalcino Aortic Consortium. Dr. Prakash’s translational research focuses on the contribution of rare genetic variants to bicuspid aortic valve (BAV)\, the most common adult congenital heart defect. Dr. Prakash uses an innovative strategy to identify new candidate genes for BAV\, based in part on the hypothesis that reduced dosage of genes on the X chromosome is responsible for sex differences in the prevalence of BAV and other congenital heart diseases. His team demonstrated that specific rare genetic variants predict complications of patients with BAV. Dr. Prakash has received funding from the National Science 1 Foundation\, American Heart Association\, National Institutes of Health\, and the John Ritter Foundation for Aortic Health\, which funded the first clinical trial of exercise in aortic dissection survivors led by Dr. Prakash. \nDonations and sponsorships make learning events such as this WE LEARN webinar activity provided freely and accessible to everyone. Please support us today!
URL:https://turnersyndromefoundation.org/event/living-with-turner-syndrome-caring-for-your-heart-and-blood-vessels/
LOCATION:Online
CATEGORIES:Virtual
ATTACH;FMTTYPE=image/png:https://turnersyndromefoundation.org/wp-content/uploads/2025/08/Living-With-Turner-Syndrome-Caring-For-Your-Heart-and-Blood-Vessels.png
ORGANIZER;CN="Turner Syndrome Foundation":MAILTO:info@tsfusa.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250601
DTEND;VALUE=DATE:20250901
DTSTAMP:20260610T222215
CREATED:20250325T153751Z
LAST-MODIFIED:20250516T180527Z
UID:10002172-1748736000-1756684799@turnersyndromefoundation.org
SUMMARY:Summer Read-A-Thon
DESCRIPTION:Do you love to read?\nThe Turn a Page for Turner Syndrome Read-A-Thon is an opportunity for us all to come together to enjoy the love of reading while raising funds to support the Turner syndrome community!\n\nFrom June-August 2025\, set a goal for your summer reading and fundraising for TSF. Earn prizes for reaching your reading and fundraising goals! \n\n\nWho should participate? \nAnyone can participate. If you love to read or want to get more into reading\, this is a great opportunity to set goals and hold each other accountable to them while supporting TSF! Not only will you experience the benefits of reading\, you’ll feel great knowing you’re supporting a cause you care about. Get your home team involved in a virtual reading club to encourage reading through friendly competition for prizes.  \n\nHow do I sign up?  \nCreate your fundraising team or individual fundraising page using the form. The cost to participate is $5 and is a donation to TSF’s mission. \nOnce you have registered\, create and share your fundraiser as we get ready to kick off in June! Stay tuned for more updates about prizes\, events\, and more. \nREGISTER & SPONSOR A READER\n  \nPrizes include: \n\nMost funds raised – $100 Amazon gift card & Turn a Page t-shirt & tote\n2nd most funds raised – $50 Amazon gift card & Turn a Page merch of choice\nMost individual donors – Turn a Page merch of choice\nMost books read: adult – gift basket with reading light\, “her fight” bumper sticker\, wristband\, Turn a Page merch of choice\nMost books read: youth – gift basket with reading light\, TS book\, teddy bear\, Turn a Page merch of choice\nParticipation: everyone who signs up gets a bookmark
URL:https://turnersyndromefoundation.org/event/summer-read-a-thon/
LOCATION:Online
CATEGORIES:Virtual
ATTACH;FMTTYPE=image/png:https://turnersyndromefoundation.org/wp-content/uploads/2025/03/Read-A-Thon-2025-3.png
ORGANIZER;CN="Turner Syndrome Foundation":MAILTO:info@tsfusa.org
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