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Spreading Awareness with Rodrigo Colon

Subscribe to our blog Rodrigo Colon sat down with Lori Kobular on his podcast, Own Your Career Special, to discuss her experience with Turner syndrome and the importance of awareness that truly impacts the lives of women. When Rodrigo’s granddaughter, Lily, was diagnosed with Turner Syndrome, his first reaction was, “What is that?” Rodrigo Colon Lori Kobular What is Turner Syndrome? As Lori explains, Turner syndrome is “When a female is born missing either partial or all of her second X chromosome… It’s nothing that’s genetically passed on; it’s just something that happens at conception.” Turner syndrome affects over 2 million women and is crucial to detect as early on

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A Valentine’s Gift For You and TSF: Friendship Bracelets

Subscribe to our blog We’ve all heard of friendship bracelets. But, what if there was a bracelet that could connect our special community here? With the Little Words Project, that opportunity is here! My name is Nicole Topp, and I’m proud to have helped create a bracelet for us that beautifully displays TSF surrounded with rainbow breads. Even more, The Little Words Project organization donates 25% of the proceeds to TSF with every purchase! Why Should I Buy a Bracelet?Buying this bracelet is not just a part of a fundraiser. It’s much more. As a TSF volunteer over the past few years, I’ve had the opportunity to be involved in spreading awareness for

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Education & Communicating TS

Let’s Learn: Non-Verbal Learning Disabilities

If the term NVLD (Non-Verbal Learning Disability) is unfamiliar, we are here to change that today! Non-Verbal Learning Disabilities are learning disabilities where an individual has deficits in visual-spatial abilities and math, often contradicting their strong verbal skills. It is estimated that these disabilities are present to some degree in 99% of females with TS. Let’s dive into what an NVLD is, the experiences of those who live with NVLDs, and how the professional community is getting involved. What is a Non-Verbal Learning Disability? Non-verbal Learning Disabilities (NVLD) can range widely in their severity and the ways in which they affect those who live with them. Most NVLDs involve a

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#Women’sHealthResearch Matters

     As an individual or a group, there are lots of opportunities to be an advocate for healthcare equity and to make a true difference for women with TS. Advocacy takes many different forms, and your experience as an advocate can be tailored to your unique interests and skill sets. Legislative action is a wonderful way for advocates to invoke change at the governmental level. Currently, there is a petition through TSF that would help to bring awareness of TS to state and federal representatives, which could help to implement policies designed to improve patient care for women with TS. Patients with TS may require lifelong specialized care and

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card sale

Kick-Off the Holiday Card Auction

https://videos.files.wordpress.com/dBvVCDDe/winter-sale.mp4PICK YOUR HOLIDAY CARD – WE MAIL IT FOR YOU!Looking for an easy way to support the Turner syndrome community and get ready for the holidays? The Turner Syndrome Greeting Card Sale is here! The variety of holiday cards for the autumn and winter holidays, including Halloween, Thanksgiving, Christmas, Hanukkah, and New Years. Proceeds go to the Turner Syndrome Foundation, which operates solely on donations to provide information and support for the Turner syndrome community. Buy it now $5 plus shipping and handling. Order one card at a time.TS Awareness Card AuctionThe Turner Syndrome Foundation is once again running an Awareness Card Auction! This time, it is the Kick-Off the

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Collaborations for Awareness of Turner Syndrome

Rally Together For TS with CATS!

     Imagine just how many things you have to keep track of on a daily basis. Groceries, laundry, meetings, emails, and at this time of year, holiday shopping. Everything takes time, energy, and money, but for individuals and families with Turner Syndrome, gift wrapping might be the least of their worries if they are facing mounting healthcare bills and accommodations. Growth hormone treatment alone costs up to $60,000 dollars a year. This is why Paul Sullivan believes in the necessity of the Collaborations for Awareness of Turner Syndrome Working Group (CATS) to advocate and raise awareness for TS. He is initiating a fresh approach to invite you to learn

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