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Thursday July 11, 2013 |
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Time |
Topic |
Location/Audience |
| 10:00-12:00 | Preregistration | Ft. Worth Foyer |
| 4:00-6:00 | Preregistration | Ft. Worth Foyer |
| 5:00-6:30 | Optional Dinner – prepaid | Townhouse Kitchen |
| 7:00-8:30 | Optional Dinner – prepaid | Townhouse Kitchen |
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Friday July 12, 2013 |
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Time |
Topic |
Location/Audience |
| 8:30-11:00 | Chapter/Support Group Training SessionCurrent Chapter/Support Group leaders – Join the Chapter/Support Group Committee for an educational session and hands on tools to help improve local chapter and support groups. | Houston I |
| 9:00-11:00 | Children’s Leaders Meet | El Paso |
| 9:00-5:00 | Healthy Heart Screening – Echocardiograms will be done at no charge for any girl or women with TS, while at the conference. If you would like to sign up call Krista Gaeta to set up a time at 503-494-9899 | Laredo |
| 10:00-4:00 | Registration | Ft. Worth Foyer |
| 11:00-12:00 | Talent Show MeetingPreregistration Required | Houston II |
| 12:30-12:50 | MANDATORY Parents Meeting – A short information session about weekend activities, group rules, and required permission forms. Please bring your child with you | Austin III |
| 1:00-2:00 | Welcome/Annual TSSUS Membership Meeting – Join us for a warm welcome, a fun introduction to our national Butterfly Walk, and an annual business meeting. | Dallas Ballroom |
| 2:00-3:00 | TS Medical Update – Dr. Carolyn Bondy – A presentation on the most recent medical findings and recommendations concerning Turner syndrome. | Dallas Ballroom |
| 3:10-4:00 | State Meet & Greet – Meet other conference attendees from your state. This is an opportunity for you to share your contact information. | TBA |
| 4:10-5:00 | Peer Group ForumsThis is an opportunity to meet and talk with similar peers (adult TS women, husbands/companions, parents, grandparents, etc.) who listen and share experiences dealing with TS. |
TBA |
| 5:15-6:15 | First Timers Welcome – Is this your first conference? You don’t want to miss this informal social to meet others. Learn about the weekend, receive support, and share experiences. | Dallas II |
| 6:15 – until | Dinner on Your Own | |
| 8:00-10:00 | Talent Show – Who’s got talent? Whether it’s singing, dancing, playing an instrument, acting or more, we will see and hear some of our fellow conference attendees as they perform for us. Preregistration required. | Dallas II |
| Line Dancing – In preparation for the Saturday night DJ party; come learn the steps of a few line dances. Then you can show off your stuff on Saturday night. Open to all ages. | San Antonio Foyer | |
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Saturday July 13, 2013 |
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Time |
Topic |
Location/Audience |
| 8:00-9:00 | Breakfast / Fashion Show | Dallas Ballroom |
| 9:00-5:00 | Healthy Heart Screening – Echocardiograms will be done at no charge for any girl or women with TS, while at the conference. If you would like to sign up call Krista Gaeta to set up a time at 503-494-9899 | Laredo |
| 9:00-10:15 | Wait A Minute – Monte Davenport, PhD – Don’t stress out. Learn tips to manage your time so you can do the things you need to and still have time to do the things you want to. Women with TS | San Antonio I |
| Cardiovascular Disease – Shawyntee Vertilus, M.D. – Learn what the risks are for cardiovascular disease. Find out how to recognize a heart attack. Get information on prevention to help reduce your risk. All | San Antonio II | |
| Genetics 101 – Scott Hawley, M.D. – A general discussion of genetics as related to TS, including explanations of words such as karyotype, mosaic, XO, and more. Newly Diagnosed | Ft. Worth I | |
| Safe & Healthy Relationship – Alyson Culin – This program recommends tips for preventing violence and creating healthy relationships. Communication techniques, needs of those affected by violence and available resources will be discussed. Young Adults 18-24 | Houston I | |
| Building an equal Relationship – Dean Mooney, Ph.D., NCSP – Understanding the strengths of your partner and building on them can give you realistic expectations in your relationship, resulting in a stronger relationship. Spouse/Partner | Amarillo | |
| Dealing with Loss – Mara Gittess, M.A., L.P.C. – Dealing with loss whether through death, a relationship, a job or more is difficult. Hear from others about how they dealt with their losses in a healthy way and became stronger for it. Discussion Group | Houston II | |
| 10:30-11:45 | Keeping Me Healthy – Joel Steelman, M.D. – This workshop will discuss every day choices that can lead to a healthier you. This includes a look at food choices, activities, and the importance of using schedules to keep your healthcare on track. You will walk away with something tangible to apply at home. Women with TS | San Antonio I |
| Identify Your Daughter’s Strengths – TBA – Sometimes we focus on milestones that aren’t being met or behaviors that need improvement, failing to recognize what our daughter is doing well. Learn how to recognize and encourage her positive traits and teach her to use them to her advantage. Parents | San Antonio II | |
| Turner Syndrome 101 – Lournaris Torres-Santiago, M.D. – The basic principles of Turner syndrome will be presented in simple language for those just learning about TS. The speaker will follow an outline based on the TS: A Guide for Families booklet. Newly Diagnosed | Ft. Worth I | |
| Wait A Minute – Monte Davenport, PhD – Don’t stress out. Learn tips to manage your time so you can do the things you need to and still have time to do the things you want to. Young Adults 18-24 | Houston I | |
| Special Needs Financial Planning – Doreen Sciulla – This informal discussion will include information on financial planning for your special needs child to ensure her care is provided throughout her life. Parents | Amarillo | |
| Managing Meltdowns – Jessica Lord Bean, PhD – You can feel the meltdown coming and you can feel your temperature rising. Learn how to manage the meltdowns and keep your sanity. This session will allow you and your peers to share ideas. Parents of 2 to 6 years old. | Houston II | |
| 12:00-1:00 | LUNCH | Dallas Ballroom |
| 1:00-2:15 | Succeeding at Work – Health & Human Services – The American with Disabilities Act (ADA), as defined in the work place, is a broad law that may allow you to be treated more fairly at work. It applies to hiring, training, accommodations, opportunities for advancement, and more. Found out if you may benefit from this law. Women with TS | San Antonio I |
| Time Management – Monte Davenport, PhD – Don’t stress out. Learn tips to help your daughter manage her time so she can do the things she needs to and still have time to do the things she wants to. Parents | San Antonio II | |
| Growth Hormone 101 – Paul Thornton, M.D. – An overview of growth hormone, statistics of effectiveness, and recommendations for girls with Turner syndrome will be presented. Newly Diagnosed | Ft. Worth I | |
| Budgeting – Dennis Culin – Budgeting can be a challenge, especially in today’s economy. Get informed about banking, credit, household budgeting, and investing. Women with TS | Amarillo | |
| Preparing for Independence – Dean Mooney, Ph.D., NCSP – All parents question our parenting skills. Uncertainty, like “My daughter has TS and I don’t know what she is truly capable of” adds more worry. Learn age appropriate skills that will allow your daughter to take care of herself. Parents of 10+ years old | Houston II | |
| 1:00 – 3:45 | Health Seminar – Karen DeMuth Freedle, M.D. – Information on keeping yourself healthy will include education and recommendations for bone health, diabetes, hormone replacement therapy, heart, organs, teeth and more. Learn how to manage and advocate for your own healthcare. Work together and share ideas to make a personalized health plan that works for you. Included in the Health Seminar will be hands on schedule planning for healthcare, copies of recommendations to give to your physician, and tools, ideas, and contacts to support your individualized health plan. Young Adults 18-24 | Houston I |
| 2:30-3:45 | Lymphedema – Baylor Lymph Clinic – A blockage of the lymph vessels that drain fluid from tissues throughout the body and causes swelling is known as lymphedema. This session will provide information about the causes symptoms, and treatments of lymphedema. All | San Antonio I |
| Training Your Brain – Tools to Take Home – TBA – Seeing the whole picture and reacting accordingly can be difficult. This workshop will help you recognize executive function weaknesses and send you home with a toolbox full of ways to help you train your brain to work differently. All | San Antonio II | |
| Cardiology 101 – Michael Silberbach, M.D. – learn about general cardiovascular concerns related to Turner syndrome as well as general information on congenital heart disease, hypertension, and related issues. Newly Diagnosed | Ft. Worth I | |
| Getting Your Life in Order – Community Council – It’s important for you to have a plan for when your life is close to the end. Find out what documents you should have in place. Learn about living wills, medical power of attorney, what happens if you don’t have a will, leaving your body to science, and other interesting things you may not know. Adult Women ages 55+ | Amarillo | |
| She Forgot Her Homework – Dean Mooney, Ph.D., NCSP – Some girls with Turner syndrome and/or Nonverbal Learning Disorder process information differently. Learning how her brain processes information can bring better understanding, less frustration, and more accepting so you and your daughter can have a better relationships. Dads | Houston II | |
| 4:00-5:15 | Genetics 202 – Scott Hawley, M.D. – Dr. Hawley will give a clear understanding of mosaicism, dispel myths about TS, explain how TS occurs genetically, and provide information on the differences between the maternal and paternal links. All | San Antonio I |
| Special Education Process – Linda Westrick – This session will help you determine if your daughter needs special education services through the school system and if so, the steps a parent should take to get the services. Parents | San Antonio II | |
| OMG! My Daughter Has TS! – Shawn Wier, Trisha Howard – Have you recently received a TS diagnosis? Hear from moms who were once in your shoes, how they dealt with the diagnosis, what to expect in the future, and why you and your daughter are going to be okay. Newly Diagnosed | Ft. Worth I | |
| I Am Different – Mara Gittess, M.A., L.P.C. – Appreciate the differences and similarities shared by all people. Learning to truly accept yourself as you are will allow you to show the world your awesomeness and help you understand areas that you would like to improve. Young Adults 18-24 | Houston I | |
| Be Fit Active & Healthy – Sounds cliché but women with TS must take their health seriously. Learn important ways to keep socially, physically, and mentally healthy while keeping TS related issues in mind. Adult Women ages 55+ | Amarillo | |
| Letting Go – TBA – This session is about you and letting go. After spending your daughter’s life protecting and advocating for her, it is hard (and scary) to send her out into the world. Prepare yourself to be ready to transition your child into adulthood and avoid being overprotective. Parents of 14+ years old | Houston II | |
| 6:00-7:15 | Banquet Dinner | Dallas Ballroom |
| 7:30-9:30 | County Fair – Join us for some Boot Scootin Fun at the County Fair with games, face painting, bounce house, and more. Open to all ages. Anyone under the age of 4 must be accompanied by an adult. Supervision provided for children ages 4-10. ALL children must be picked up by 9:30 pm. Please be considerate, arrive on time so our volunteers have some free time to enjoy our events. | Austin I |
| Quiet Room –Supervised childcare will be available. Pillows, blankets, and a movie will be provided. This room is for children who have had a long day and are ready for a quiet evening. ALL children must be picked up by 9:30 pm. Please be considerate, arrive on time so our volunteers have some free time to enjoy our events. | Ft Worth I | |
| 7:30-10:00 | Boot Scootin Boogie – Ages 11 – 17 – Put on your dancing shoes and join us for an evening of music, dancing, and fun at our annual DJ party. This party is open to teens and preteens ages 11-17 years old. Everyone is encouraged to wear country western attire to celebrate this year’s theme but is not required. | Austin III |
| 7:30 – 11:00 | Denim & Diamonds Celebration – Adults Only (18 years and older) - Put on your dancing shoes and join us for an evening of music, dancing, and fun at our annual DJ party. A cash bar is available. This party is open to anyone 18 years and older. Everyone is encouraged to wear country western attire to celebrate this year’s theme but is not required. Children’s activities will be provided until 9:30 pm. | Dallas Ballroom |
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Sunday, July 14, 2013 |
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Time |
Topic |
Location/Audience |
| 8:00 – 9:00 | Breakfast | |
| 9:00 – 10:00 | Protecting Yourself- This program recommends tips for preventing violence and creating healthy relationships. We also address communication techniques, the needs of those affected by violence, and available resources. Women with TS | San Antonio I |
| Is Your Daughter A Target of Bullying? – Jessica Lord Bean, PhD – This workshop provides parents with a practical understanding of identifying “bullying” behavior and the impact it can have on children, more specifically children that may be different than their peers. Parents | San Antonio II | |
| Be Optimistic - Mara Gittess, M.A., L.P.C. – Learn how to make it a habit to find the silver lining in clouds of gray. Find out how to deal with disappointments as well as great losses. Young Adults 18-24 | Houston I | |
| Ring Chromosome Karyotype – Catherine Melver, M.D. – This discussion will help you understand the ring chromosome karyotype along with how it affects you/your child. You will have an opportunity to ask questions and get support from your peers. Women/Parents with Ring Chromosome Karyotype | Amarillo | |
| Financial Retirement Planning – Doreen Sciulla – Learn the importance of having a solid financial plan in place to care for yourself in your golden years. Find out what is needed and where to get help to design the best plan for you. Adult Women ages 55+ | Houston II | |
| 9:00 – 11:15 | Nonverbal Learning Disorder – Dean Mooney, Ph.D., NCSP – NLD involves deficits n perception, coordination, socialization, non-verbal problem solving, and understanding of humor, along with well-developed rote memory. Find out strategies that may help your daughter deal with the struggles associated with the symptoms. Newly Diagnosed | Ft. Worth I |
| 10:15-11:15 | Be Optimistic - Mara Gittess, M.A., L.P.C. – Learn how to make it a habit to find the silver lining in clouds of gray. Find out how to deal with disappointments as well as great losses. Women with TS | San Antonio I |
| Keeping Your Child Safe – This program gives parents tips for protecting their children from abuse. Topics include child sexual abuse, internet safety, parents’ roles in protecting their children, and how to talk to your children about safety. This program expresses the importance of encouraging healthy self-esteem in kids. Parents | San Antonio II | |
| Q&A – Emily Havrilak – End the weekend with a questions and answers sessions about any of the materials covered or questions that weren’t answered during the conference. Young Adults 18-24 | Houston I | |
| Y Chromosome Karyotype – Catherine Melver, M.D. – This discussion will help you understand the y chromosome karyotype along with how it affects you/your child. You will have an opportunity to ask questions and get support from your peers. Women/Parents with Y Chromosome Karyotype | Amarillo | |
| 11:25-11:55 | Farewell / Closing Remarks – Cindy Scurlock | Dallas Ballroom |
| 1:00-6:00 | Perot Museum/Dallas Tour – Prepaid optional activity | Meet in hotel lobby |
