04-16-24 TAR Syndrome and Limb Difference
Filomena Tripp was born in 1955 in Sao Miguel, Azores. She lives in New Bedford, MA with her husband James. She is an Independent Living Specialist and has enjoyed a career working with people with disabilities.Filomena has spoken at numerous conferences and rallies in North America and parts of Europe. She received awards from The Massachusetts Rehabilitation Commision (MRC) and Southeast Center for Independent Living (SCIL).Filomena’s mission is to show others how possible it is to live the life of their dreams. https://filomenatripp.com/
Martariesa Logue
Martariesa epitomizes dedication, conscientiousness, and an unwavering drive, earning acclaim for surpassing expectations. Praised by mentors, she excels in proactive problem-solving and attentive listening. Her educational path, a fusion of online and traditional learning, led to a Paralegal Studies BS from Liberty University. Transitioning from student to educator at Eastern Gateway Community College, she now serves as Assistant Director for the Virtual Learning Academy. Alongside family life, marked by her 2023 marriage and cherishing moments with her daughter and two Beagle pups, she actively engages with Impact Church and the Sycamore Youth & Community Center, showcasing a deep commitment to community service beyond her corporate role.
Marla Hamann (Mom to Emma)
Marla Hamann is wife to Roy, a daughter, and mother to three beautiful children, Deion, Noe, and her precious TARS Warrior Princess, Emma Layne. She is a stay-at-home mom to help Emma with everyday life and works to grow their non-profit organization, TARS Awareness Texas. TAT is a 501 (c)3 organization that supports individuals and families impacted by TARS. All proceeds from the sale of the Emma’s Adventure Series of books go directly to TAT.
Chevi Price is a mental health/disabilities advocate and speaker who teaches others to take care of themselves and that they’re worthy through having TAR. So many question their worth every day, especially when they’re in school. Chevi is featured in Emma’s Adventures and Born Abel books and is committed to bringing awareness to TAR Syndrome
Ashlee Therrel is Mom to Avery Therrel (3 years old). She lives in Hiawassee GA with her family of five. While her adulthood has always been spent serving others, she finds herself advocating alongside her husband for their son Avery. She has a heart of passion and really brings a lot to the table when it comes to serving those she loves. Through multiple testing, they were able to become more familiar with TARS prior to the delivery of their son. Gaining time and knowledge with the medical teams together before his arrival was a huge succession when transforming into a TARS family. Avery leads a life full of abundant courage, independence, love and kindness. His motto is to NEVER GIVE UP.
Tori Smith is 24 years old and lives in Grand Junction Colorado. She has TAR Syndrome which causes her to have short arms, and easy bleeding. All this means is Tori looks different than others and has to be careful of what she does. Sometimes she uses a wheelchair as she has other problems with her legs but that doesn’t stop her! She’s very happy with who she is and what her abilities are. When Tori was 18, she won a gold medal at The 2018 Special Olympics USA Summer Games for the 100 meter freestyle. She loves to swim and has her sights set on paralympic medals next! Tori is involved with her local ARC Chapter, as secretary on the board. She’s looking forward to vlogging her experience of living with TAR syndrome.
Jylan Ross was born with TAR syndrome. He was missing the radius bone, had a collapsed trachea, and a dislocated left hip characteristic of TARS. Doctors at Shriner’s Hospital for Children in Lexington were able to straighten Jylan’s hands, helping him to do everyday activities. Jylan, because of bullying at the age of 8, was on the verge of committing suicide, but God had a purpose for his life. He founded TAR SYNDROME AWARENESS MOVEMENT in Kentucky, and April is now Nationally recognized as TAR Syndrome Awareness Month. He also created “TAR Syndrome Association”.
Katie Blair, at 36, is in the vibrant chapter of life, surrounded by her two daughters’ boundless imagination and energy. She navigates life with long-arm TAR, which teaches her resilience and the beauty of difference. Once a nurse aide, her path has led her to serve others as a Customer Service Representative for Medicaid, blending her love for helping with her professional skills. Katie’s entrepreneurial spirit expresses beauty as an independent Mary Kay Consultant.
Creativity flows through her veins, and she enjoys fishing, cooking, and coloring. Her faith guides her as a steadfast follower of Jesus and a proud daughter of God. Her spirituality is the compass by which she navigates life, always seeking her path and purpose. Inspired by the past and excited for the future. Katie explores the intersections of life, faith, and creativity daily.
Video Version: https://www.youtube.com/live/jdIgcwhwS0k?si=YJWupfnJ3g96FWcs
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