The Turner Syndrome Society of the United States, August 19, 2019
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A message from the President
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Greetings!
As many of you may know, my daughter with Turner syndrome is now 21 years old – how time flies! Being a part of TSSUS has helped my family in ways too numerous to count, but today I’m thinking about how my involvement with the Turner Syndrome Society has helped us proactively plan for Brooke’s routine health needs. I quickly realized that the people I’d met at our local Houston events helped me understand TS in ways I’d never imagined before.
Personally, I was lucky enough to have been involved in a local TS group prior to seeing and meeting hundreds of people at my first TSSUS National Conference, yet the experience was still thrilling and overwhelming.
At this year’s conference, I heard from a disturbing number of people that their parent, spouse, or even doctor ignored or minimized the health implications of TS. I remember when Brooke was diagnosed, I desperately attempted to justify everything she had by pointing out which family member was short, who had a high roof mouth, a broad chest, and so on. Finally - although not easily - I accepted her diagnosis and focused on what I needed to do to help her the best I could. I was somewhat in denial of her having Turner syndrome because I didn’t understand it fully. I was fearful of what it meant for her health. I didn’t know how to explain her condition to others, and I didn’t know if somehow our family tree or environmental factors caused her to have TS.
Knowledge is truly power and I encourage everyone with TS to take the time to understand the condition by reading the patient friendly version of the
Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome
, found on our website (tssus.org) under “Living with TS” and “Guidelines and Checklists," or
click here. If you’re a parent, you owe it to your child to do the same. It’s important to understand
all the implications of TS so you will recognize an issue
if one arises.
I’ve heard from more than a handful of people saying their doctors argued with them about having TS; saying it couldn’t be possible, they didn’t look or act like they had TS. I question what that even means. It’s sad that those with TS are at a great disadvantage because they may not look or act differently enough that people recognize or respect their needs enough to understand them.
The rare genetic difference in people with TS is real. The differences among people with TS are real. Some will never live independently, some are medical doctors, and most exist between the two extremes. The support the Turner Syndrome Society of the United States provides is real because we understand everyone is unique and everyone supporting someone with TS has unique needs as well.
Cindy Scurlock
, President
TSSUS
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Conferece 2019
Another One in the History Books!
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The 32
nd Annual TSSUS National Turner Syndrome Conference in Murfreesboro, Tennessee was a huge success! Nearly 750 people attended from 44 states and several countries including Australia, Canada, Columbia, England, and Japan!
This year’s theme was
Find YOUR Voice, and the speakers, entertainment, and exhibitors provided attendees with information, resources, and encouragement to help them do just that.
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The weekend kicked off Thursday with optional tours in the afternoon to the Grand Ole Opry, and sight-seeing of celebrity homes. That evening there were optional activities including cupcake decorating with MadiCakes and Butterflies with Brushes Paint Night with Ashley for early arrivals.
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Friday, the first official day of conference, kicked off with a concert by Nashville recording artist and reality TV star, Lawson Bates, from UPtv’s hit show “Bringing Up Bates.” Lawson thrilled conference attendees with an impromptu meet and greet after the show where he signed autographs, posed for selfies, and visited with fans.
The afternoon was filled with a variety of educational sessions for all ages. The 50+ group had speakers on Social Security, selecting the right hearing aids, and exercise tips for women with osteoporosis. TSSUS president, Cindy Scurlock conducted an orientation session for young adults ages 18-25 to help them get the weekend started and offered tips for getting the most out of the conference.
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Dean Mooney, PhD., a clinical and school psychologist and a favorite conference speaker, spent the afternoon providing fathers the opportunity to openly discuss their challenges, successes, strategies, and fears about raising a child with Turner syndrome in a safe and supportive environment.
After Friday’s educational sessions, Becky Brown, National Director of Development and Communications for TSSUS, held a special V.I.P. donor reception for supporters of the monthly giving club, the
TSSUS Butterfly Society. Gracious donors participating at the $30 per month level and above were recognized with a special appreciation gift.
Friday ended with an energetic and inspirational concert by YouTube sensation,
Cimorelli, a band of six sisters, one of whom is a young woman with TS. Line dancing lessons, and Open Mic night allowed attendees to showcase their own talents.
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Saturday morning’s keynote speaker, Jessica Janniere, challenged everyone to
“Look Up and Beyond” negative life experiences and to use their voices. Drawing from traumatic experiences in her own life, Jessica encouraged everyone not to allow their situation to control them. She engaged the entire audience in an uplifting chant of ”My voice…My power!” Everyone in the room recognized their voice matters, and were inspired to use it - not only during the conference but forever. Jessica’s inspiring talk really reinforced the
Find Your Voice theme of this year’s event.
The TSSUS staff and Board of Directors followed the keynote with the official Annual Meeting of the TSSUS membership. Board chairwoman, Emily Havrilak, opened the meeting with a “mission minute” and shared her personal story and how TSSUS inspired her. Treasurer, Sarah Sullivan, reported on the financial health of the organization, and Kathleen Maley introduced candidates for the parent-at-large position on the board. TSSUS President/CEO, Cindy Scurlock, gave a moving presentation about the Society’s accomplishments over the last year, talked about the importance of the Turner Syndrome Research Registry and it’s current and future potential, shared our current strategies and upcoming strategic planning, and encouraged the TSSUS community to let their voice be heard. Brittani Ehrhorn talked about how one program, the TSSUS Healthy Heart Project, impacted her life by identifying a serious cardiac issue.
Last but not least, Becky Brown, talked about the importance of diversifying funding due to the declining support from growth hormone companies, and the dramatic positive impact the
TSSUS Butterfly Society Monthly Giving Program is having on TSSUS programs, resources and services. She called upon current Butterfly Society members to increase their monthly support amount as the program enters its third year, and invited others to compassionately consider joining as donors. TSSUS continues to advance knowledge, offers personal support, educational programs, and facilitates research for those touched by TS. So many of you answered the call, and we thank you.
The rest of the morning and afternoon offered eighteen educational sessions by expert speakers on wide-ranging topics, along with private consultations.
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Saturday night kicked off with the TS Choice Awards and Talent Show after the dinner banquet. TSSUS recognized individuals who have gone above and beyond in service to the TS community and the Turner Syndrome Society. TS Choice Award recipients are featured below.
Sunday included popular sessions on tissue donation for research and a parenting panel of mothers, plus 8 other sessions. After the closing remarks, people packed the hotel lobby to attend two optional tours to Nashville. The conference experience was powerful, and year after year parents, and people with Turner syndrome of all ages tell us, “this has been a life-changing experience.”
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TS Choice Awards Recipients
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Outstanding TSSUS Volunteers
these volunteers were honored for their dedication and service to the TS community during the last year.
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Stephanie Thompson, Texas
(pictured right)
Stephanie is a long-time TSSUS volunteer. She donates her time to the TSSUS conference, TS Days, and local events. She is an ardent TSSUS supporter, a constant social media presence, an advocate and mentor who answers questions, offers support, and grieves with expectant parents through loss. Stephanie is a mom on a mission, spreading awareness wherever she goes!
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Lynda Taylor, Delaware
(pictured left)
Lynda is full of energy and excitement, and she serves her local community with love as the TSSUS Resource Group leader in Delaware. She enthusiastically coordinated a local Chasing Butterflies walk that was a top fundraiser for TSSUS, she volunteers each year at the conference, and she consistently helps Deborah from the national office.
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Outstanding Individual Fundraisers
these volunteers were honored for their dedication and service to the TS community during the last year.
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Rio Barrere-Cain, California
Rio single-handedly raised $3,000 from her circle of support for the Los Angeles Chasing Butterflies walk. Rio is a young woman with Turner syndrome, who works in research. Rio’s walk participation was supported with donations from family, friends and colleagues.
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Denise Fisher, Pennsylvania
Denise was instrumental in coordinating the Chasing Butterflies walk in Dillsburg, Pennsylvania last year, which was the top grossing fundraising walk for TSSUS. Denise worked diligently to procure sponsors and in-kind sponsors that provided everything from characters in costumes to bounce houses and firetrucks on walk day. She received sponsorship donations from several local businesses – from her hair salon to her home builder!
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Cara Navarro, California (no photo available)
Cara worked with her employer, Argon, to provide more than 200 Adidas backpacks and supplies to those who attended the Los Angeles and Alameda, California walks. She volunteered her time and talents, along with her sister’s catering, to make the Los Angeles walk one of the most successful this year!
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Natalya Winters, Alabama
Natalya coordinated a walk in Birmingham, Alabama this year with more than 150 registered walkers – that’s almost a record breaker! She created an enormous amount of awareness in her community by employing grass roots efforts like passing out flyers in the local park and appearing as a guest on local TV news programs.
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Outstanding Independent Fundraiser
Circles of Hope Foundation, Texas
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2018 marked the 10
th anniversary of the Circles of Hope Foundation Annual Golf Tournament benefiting the Turner Syndrome Society of the United States. In this landmark year, the Stavihoha Family’s donations exceeded a lifetime giving total of $200,000! Parents Chrissy and Troy Stavinoha and grandmother Debra Alexander Algeo work tirelessly each year to make this golf tournament the success it is, and have had such a positive impact on so many with Turner syndrome. We are honored by your support. Thank you, Circles of Hope Foundation!
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Outstanding Professional
Dean Mooney, PhD, LCP
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Dr. Mooney was honored for his outstanding professional dedication and service to the TSSUS and the TS community. He has spent much of his life supporting girls and women with Turner syndrome through his knowledge of Non-Verbal Learning Disorder. He has helped countless girls and women with TS through his sessions and private consultations at TSSUS conferences, and has spoken at TSSUS events for more than a decade. His compassion knows no bounds, and he works late into the night every night at conference trying to help as many people as he can. In fact, we had to interrupt a private consultation to present this award to him! Dr. Mooney is a valued member of the TSSUS Professional Advisory Board (PAB), and is the founder of the Maple Leaf Clinic in Vermont.
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Outstanding Butterfly Award
(voted on by the TS community)
Tammy Kozak
pictured with board members Kathleen Maley and Brittani Ehrhorn
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Tammy has been a member of TSSUS for decades. She founded and emceed the TSSUS Conference Talent Show until her health prevented her from traveling. She also founded the TSSUS Choir which performed at the conference for years. She volunteered as a chapter leader in New York and governed the society as a former board member. Tammy’s strength and positive attitude throughout her life is inspirational. She’s a true friend and mentor to many butterflies, and we are proud to recognize her for a lifetime of service.
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Professional
Audio Recordings of Conference Sessions
from Resounding Voice
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We are excited to expand the educational reach of the TSSUS National Turner Syndrome Conference by providing
professional audio recordings to both conference and non-conference attendees for a reasonable fee.
Professional recordings of the sessions and slide presentations from the 2019 TSSUS National Turner Syndrome Conference are now available for purchase from Resounding Voice. Purchase the full conference or individual sessions.
We know it’s a large expense to travel to the conference, and when you can attend, it’s difficult to decide which concurrent session you want to attend, so we’re hopeful this new resource will be helpful to you.
Important Exclusions:
- Presentations by Dean Mooney, PhD and Robin Fountain, from the Social Security Administration are not available for purchase.
- Discussion group session recordings are not available for purchase due to the private nature of the discussions.
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A Call for Community Feedback
on Neck Webbing Surgery
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The turner Syndrome Society is seeking community feedback from those of you (and parents) who have undergone surgical correction of neck webbing or excess skin related to Turner syndrome.
We'd like to hear from people that have had surgery on their neck related to neck webbing. We are interested in both success stories as well as those who didn't feel the surgery was effective.
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An Opportunity for Aspiring Artists
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The Rare Artist Contest was established in 2010 by the
EveryLife Foundation for Rare Diseases
to exhibit the unique gifts of individuals affected by rare diseases and to promote the expression of their stories through art. This contest showcases both the artwork and the artist to help raise awareness about rare diseases and the rare disease community.
The contest is open to rare disease patients and their family, friends and caregivers, as well as researchers and medical professionals. Artists ages four and older are welcome. For more information on how you can enter, please visit their
Facebook
page.
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Did You Know TSSUS Offers a Conference Payment Plan?
We recognize that attending any National conference can be expensive, and the TSSUS Conference is no exception.
TSSUS is offering a conference payment plan option for those that are wanting to attend the 2020 Conference if Phoenix, AZ. These plans are designed to help you financially prepare for the conference without having to pay for registration all at one time.
Payment plan opportunities are available now, but final payment must be received by June 1, 2020.
Please contact Deborah Rios at 800-365-9944 for more information. Our goal is to help as many people as we can attend the TSSUS National Turner Syndrome Conference from July 24-26, 2020 in downtown Phoenix, Arizona!
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2019 TSSUS Official Conference T-Shirts
and other Butterfly Merch
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This year's conference t-shirt is FIRE! With the neon guitar fret on front emblazoned with TSSUS, and past conference locations and dates on the back like a concert tour shirt, this shirt is a true collectors item. Supplies are limited, so get yours today!
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TSSUS Members: Voting for the 2020-2021 parent-at-large board member is underway. Please check your email and vote if you haven't done so. If we don't have your email on file, we mailed you a paper ballot in the USPS.
This is your opportunity
to select the leader you feel will best serve the interest of parents of those with TS on the TSSUS Board of Directors.
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TSSUS Exclusive
Membership T-Shirts
Still Avaialbe While Supplies Last!
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Exclusive 2019 Member T-shirt
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All new TSSUS members and existing or renewing members have the opportunity to purchase the 2019 exclusive member t-shirts for $5 each while supplies last!
TSSUS believes in making the latest information on TS healthcare and research available to the entire TS community, regardless of one's TSSUS membership status. When you choose to support toe Society by becoming a member, you're making an impact by helping us make these resources available to everyone. Together, we are Turner Strong!
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TSSUS Chasing Butterflies Walks are happening in several cities and communities across the country, thanks to the many volunteers, women with TS, group leaders, and parents who are working with us to make them happen!
Walk coordinators may request that 50% of funds raised at a Chasing Butterflies Walk be used to support the TS community in their local area for needs that align with the TSSUS mission. This could be scholarships for membership, the TSSUS conference, life experiences, or for planning local events.
Now is the time to plan a Summer or Fall Chasing Butterflies Walk. It’s fun, and we can help you every step of the way! Check tssus.org for a walk in your area, or call Deborah Rios at 800.365.9944 about planning one in your community today!
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Dillsburg, PA
August, 24, 2019
Logan Park
Walk Coordinator: Denise Fisher
Plymouth, MN
September 7, 2019
French Regional Park
Walk Coordinator: Colleen Daman
Puyallup, WA
September 7, 2019
Bradley Lake Park
Walk Coordinator: Deanna Crumpton
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McKinney, TX
October 5, 2019
Towne Lake Park
Walk Coordinator: Kimberly Prince
Wooster, OH
October 12, 2019
Secrest Arboretum at OARDC
Walk Coordinator: Brannon Workman
Sugar Land, TX
December 7, 2019
Sugar Land Memorial Park
Walk Coordinators: Kim Graham, Charity Cox, Deborah Rios, Becky Brown
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TS Days 2019
August 2019- Seattle, WA
September 2019- Chicago, IL
October 2019- Phoenix, AZ
November 2019- Ft. Lauderdale, FL
Stay tuned for more information on dates and locations for TS Days 2019. Make sure you follow TSSUS communications and keep in touch! You don't want to miss these fun, educational, regional events when we are in your area.
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This special issue of the American Journal of Medical Genetics features articles and findings from the Turner Resource Network Symposium in July 2018. TSSUS had a limited number of this journal printed, and they are available in our webstore.
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TSSUS is proud to offer this invaluable resource
free of charge to the TS community. This small card fits in your wallet or child's backpack. You can order one free card from the TSSUS webstore, and download additional copies from our website.
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The patient and family friendly summary version of the Clinical Practice Guideline for the Care of Girls and Women with Turner Syndrome is perhaps the most important document a person with TS or a parent can read. Please order or download this and and follow the recommended guidelines for tests and screenings.
Visit the Checklists and Guidelines section of our webpage for the free download, or visit our store to purchase hard copy.
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TSSUS - We're All About Local Events!
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Did you know that local events are at the heart of the the TSSUS mission?
Our mission is to advance knowledge, facilitate research, and provide support to all those touched by Turner syndrome. We provide support through our brick and mortar office and 800 phone line where we take calls Monday - Friday. We strive to offer support around the clock through our social media channels. And we support local TSSUS groups and volunteers in cities and communities across the country with local social and educational events!
We talk to people with TS and their families every day who have never met another person with the condition. We know how important and life-changing it can be to connect with another who shares the same challenges and triumphs you share, or a parent who has questions, or one who is sharing your experiences and has been through something similar with their own child.
Connections
Through Local Resource Groups and dedicated TSSUS volunteers, we are connecting women and girls with TS and their families. Sometimes all it takes is that one special connection - that one special friend - to make a tough day brighter. TSSUS wants to help make those friendships and connections possible.
Events Calendar
All TSSUS Local Events are on our website - from Chasing Butterflies walks, to small get-togethers for lunch and shopping, you can find opportunities to participate. If you don't find something is your area, reach out to us to talk about hosting a TSSUS meet & greet yourself. We will help!
TSSUS is your organization. We're always working on the bigger picture of research, the Turner Syndrome Research Registry, the Conference, the Turner Resource Network, and providing you with the best TS resources available like the new Cardiac Emergency Alert Card and our website, but you at at the heart of all we do. You are TSSUS.
Thank you for being such a vital part of what we do.
Please visit our local events calendar by clicking on the link below:
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Seattle, WA
TSSUS TS Day
August, 24, 2019
Hilton Garden Inn Downtown Seattle
Chicago, IL
TSSUS TS Day
September 21, 2019
TBD
Beaverton, OR
Turner Learning Day
TSSUS Oregon Resource Group
September 21, 2019
Beaverton Community Center
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Seattle, WA
TSSUS TS Day
August, 24, 2019
Hilton Garden Inn Downtown Seattle
Phoenix, AZ
TSSUS TS Days
October 19, 2019
TBD
Fort Lauderdale, FL
TSSUS TS Days
November 16, 2019
TBD
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Thank you for being a part of the Turner Syndrome Society community. Please contact us with any questions or if you have news and information you'd like us to consider to share.
Sincerely,
Becky Brown
National Director of Development & Communications
The Turner Syndrome Society of the United States
11250 West Road, Suite G
Houston, TX 77065
Toll free: 800.365.9944 Mobile: 832.465.9388
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