Community of Advocates: Staff & Volunteers
Meet the TSF Staff and Volunteers
Director and Founding President
Determined to make a difference in the lives of individuals with Turner Syndrome through education, research and support, I founded this organization to advocate for baby girls and women born with this randomly acquired and complex condition. Precious lives, families and communities are struggling for answers.
LEARN ABOUT TURNER SYNDROME
Get to know our mission, the CAUSE, and find a way that is meaningful for you to GET INVOLVED.
Health Initiatives Coordinator
As part of the Turner Syndrome Foundation team, I am here to help find solutions to your everyday questions and concerns. Using the abundance of information on our website, my daily communication reaches the person who contacts TSF, whether by e-mail to welcome the new registrant or by phone to share the emotions of a newly diagnosed woman.
Health Initiatives Coordinator
As Health Initiatives Coordinator at the Turner Syndrome Foundation, I work to generate and expand research and educational resources for both medical professionals and those affected by TS. To date, I have assisted in the coordination of the Council on Infertility's publication as well as developed numerous resources for the TSF website. I am dedicated to the mission of TSF to ensure that in the near future every women touched by Turner Syndrome will have her questions and concerns answered.
HR Volunteer Coordinator
As the volunteer coordinator, my role is to identify and align talent with an opportunity to give back that is both meaningful and rewarding. Each indvidual contributes to the TSF overarching goal for national advicacy through our National Council of State Leaders program. There is an opportunity for everyone.
Intern: The College of New Jersey
Intern: Princeton University
Some of our volunteers are impacted by Turner Syndrome, and some are not. Some will volunteer regularly, while others will contribute once or annually, or whenever needed.
Here is a current list of committee participatory volunteers:
Kimberly Dunn Carolan
Nancy Lynn Carter
Patient Advocate, Newsletter, Council on Infertility
JoLynn Backes is a writer, teacher, advocate, wife, and mother. She was diagnosed with Turner Syndrome at the age of five, but has not let that slow her down. She has a B.A. as well as a Masters of Education; currently, she teaches online business and literature classes.
Her involvement with the Turner Syndrome Foundation began shortly after she moved to New York from Chicago in 2008. In 2012 she underwent IVF with eggs donated from her sister. She now has an 18 month old son who keeps her extremely busy when she isn’t putting together the Foundation’s newsletter or working to raise awareness as part of the Council on Infertility
My daughter, Kellie, was diagnosed as hearing impaired at the age of 4; however, the diagnosis of Turner Syndrome did not come until the age of 13. The Chief of Endocrinology at Baystate Medical Center sat with my husband and me and explained Kellie’s diagnosis; there was very little information in print and two of Kellie’s pediatricians had missed the diagnosis. I had to advocate with the school system to have them provide an IEP and I became a member of the Parent’s Advisory Board at Willie Ross School for the Deaf when it was decided Kellie would be mainstreamed into the public school system. Kellie is now in her mid-forties. She had a stroke in her thirties and is struggling with other physical complications of Turner’s syndrome while working 32 hours a week just to be eligible for medical insurance. However, her insurance will not provide for hearing aids which she must have in order to continue to work, or diabetes testing supplies. It is my goal to pursue all avenues to find proper insurance, not only for Kellie, but for other women with Turner’s who find themselves in the middle of insurance company red tape and state programs that fail to provide coverage for her medical requirements. It is a dilemma that my daughter cannot navigate by herself so I am dedicated to advocating for legislation that will provide for women with Turner Syndrome.
I have a B.S. in Criminal Justice and worked as a paralegal for 15 years. I currently work as a Client Loyalty Specialist for a software company as a ‘remote’ employee working out of my home office.
Carol has obtained her masters degree in psychology and specializes in mediation of conflict resolution. She is currently employed with Drug Free America Foundation, Inc./Save Our Society From Drugs, Inc, St. Petersburg, FL, as paralegal for legislative and congressional affairs. She is well poised to advance new legislation towards a greater awareness and protection for all individuals with Turner Syndrome. She has joined the TSF Insurance Committee and will implement a cohesive plan for national advocacy.
Nancy Lynn Carter
National Council of State Leaders - South Carolina
Patient Advocate and Educator
My name is Nancy Lynn Cater, I'm 45 years old and I live in Florence, SC. I was diagnosed with Turner Syndrome when I was only a few months old. I have wanted to reach out to others with Turner Syndrome for a very long time but never quite found an "open door", until now. My husband, John, is my unfailing support system and encouragement. I am a teacher and I want to use my talents to educate and advocate for patients and families living with Turne rSyndrome. I hope to raise awareness because the indicators can easily be dismissed as "differences". Early diagnosis and treatment can and does make a difference.
National Council of State Leaders - New York
Insurance Committee, Legal Advocate
Livia Cooper was a tenured elementary school teacher in the Lakewood, New Jersey school system before relocating to Suffolk County, Long Island, in New York, where she is currently residing. Always civically minded, Livia attended Jacob D. Fuchsberg School of Law where she obtained a Juris Doctor and is admitted to the New York State Bar. Certified in Family Court Mediation she volunteered to mediate custody and visitation matters for the Nassau County Court System. After retiring from the practice of law, Livia worked with her husband in his Family Medicine practice until his retirement. Livia has been assisting families facing huge medical bills from out of network providers, writing appeals and negotiating settlements, where the bills have either been reduced or forgiven. She looks forward to volunteering with the Turner Syndrome Foundation.
Livia Cooper was featured in 2013 New York Times article: New York Times article:
Out of Network, Not By Choice, and Facing Huge Health Bills
I have the privilege of moderating this TSF page for our beautiful State of Missouri. I am 35 years old. I was born in Bogota, Colombia, South America. I was diagnosed with TS when I was 11. I started growth hormone treatments shortly after that, then moved to the US when I was 12. Although I did feel different from other girls growing up, I learned to see these differences in a positive light. Maintaining this outlook and having the loving support of my family was key to my success in school and other significant endeavors. I attended Saint Louis University and earned a Bachelors degree in International Studies and History. I had the opportunity to study abroad in Madrid, Spain during the first two years at SLU, and it was an awesome experience. I returned to the US in 2001 to finish my program of study in the Saint Louis Campus . Then in 2002 , I met my wonderful husband Eric, who loves me and accepts me for who I am. We have been happily married for 10 years. We do not let the challenges that come with TS , even significant ones like my infertility and my inability to drive, hinder our relationship. Instead,we focus on God, family ,and mutual love and respect to strengthen it. I hope that by sharing my story and volunteering for TSF as a moderator for this page, I can help spread awareness and build a support system that will lead girls and women with TS and their families to the resources and information they need. I feel that with a strong support system and the right resources, girls and women with TS can overcome may of the challenges they face in the journey to reaching their full potential. I'd like to invite everyone in Missouri ,directly or indirectly affected by TS ,to follow the page, weather it's for support or information, to share your story or information / resources that you have found valuable in the TS journey, or to help us raise awareness!
National Council of State Leaders - Kentucky
I am honored to be working with the Turner Syndrome Foundation and I am really excited about this opportunity. I am in my late twenties and was diagnosed when I was the age of two. I was born and raised in Owensboro, KY. I am the oldest child in my family and have a sister and three younger brothers. Turner Syndrome has affected my life in so many ways both positively and negatively. I have had about 45 surgeries since I was the age of two, and they were primarily on my ears to correct severe ear infections and eardrum damage. The hardest part of living with Turners was feeling alone and different. If I had not been diagnosed with Turners I would not have met my best friend and TS sister. Because of my Turners I feel I appreciate my accomplishments that much more I have always wanted to succeed. I am currently working on my master’s degree in social work at Western Kentucky University (Go Hill Toppers!!!) and I am due to graduate in May 2016. There are very few resources or outlets for support in Kentucky, and I hope by working with the Turner Syndrome Foundation I can help to bring a focus to the State of Kentucky. I have big plans for the KY butterflies and am proud to be representing my home state of Kentucky.
Patient Registry and Case Coordinator
Jenise is a senior of pre-med health studies major at Monmouth University. She aspires to one day work with the not-for-profit, Doctors without Borders, in South America. As the TSF patient registry and case coordinator, she provides support to the TSF Research Committee. By volunteering at Turner Syndrome Foundation she is learning more about the underlying and often complex issues of Turner Syndrome.
National Council of State Leader - Minnesota
I am 25 years old. I am the mother of a beautiful little girl who is 6 months old and has Turner Syndrome. Alexis was diagnosed in utero while I was 17 weeks pregnant. They found a cystic hygroma on the back of her neck. The Turner Syndrome Foundation is where I turned to learn facts, read others stories and watch informational videos. Although I continue to learn more myself about Turner Syndrome almost every day, my one and only goal in life is to spread awareness. From kids to adults to students and doctors, I hope to share my story along with my knowledge with everyone.
National Council of State Leaders - Connecticut
Colleen Joyce was diagnosed with Turner Syndrome at the age of 3 after she fell off the growth chart. She received growth hormone from ages 4-15 and estrogen therapy from age of 15 on. She has had 9 sets of tubes because of chronic ear infections. She embraces her condition and has started a website about her life with Turner Syndrome where she is able to build a community with others like her who are living a full and productive life with Turner Syndrome. Her website is www.freewebs.com/colleenjoyce. Colleen volunteers with the Turner Syndrome Foundation to blog about the teen/young adult social groups and can publicize other upcoming events. Colleen is presently attending Curry College in pursuit of a nursing degree.
Elizabeth Kenny-Foggin, M. A., M.S., OG-TT
Dyslexia Specialist & Orton Gillingham Teacher Trainer (IMSLEC)
Multisensory Structured Language Instruction,
Literacy Assessments, & Educational Consultation
National Council of State Leaders - Louisiana
I am forty years old and was diagnosed with mosaic Turner Syndrome at age seven. A few years later, I was blessed to be able to participate in a study using growth hormone therapy through Stanford University until my growth stopped at 4' 10". My main health issues are hypothyroidism, infertility and early menopause. After working several years as a nurse's assistant, I graduated as a Registered Nurse at age 20! I have been married eighteen years with two wonderful adopted children, whom I now homeschool.
Since the growth hormone study, I have had almost no contact with any support group or found many physicians knowledgeable about Turner Syndrome. I feel it is time to speak up and help those whose lives have been touched by Turner Syndrome and I want them to know they are not alone. I would love to see more people educated about the diagnosis and early treatment of Turner Syndrome to help all these girls reach their full potential.
I grew up in Detroit, Michigan and graduated from Wayne State University in 2003 with a Master of Science degree in Molecular Biotechnology. I moved to Atlanta, GA in 2006 and began working in the Newborn Screening Branch at the Centers for Disease Control and Prevention (CDC) providing quality control materials for hypothyroidism to state public health laboratories. In 2007, I worked on the Anthrax Clinical Trial at CDC which led to my current position as a microbiologist with the Poxvirus and Rabies Branch. Currently, I work on the development of assays for the detection of orthopox viruses, along with improving methodology for surveillance projects. I have chosen to volunteer with the Turner Syndrome Foundation to contribute to the improvement of Turner Syndrome research and to advocate by increasing awareness which is greatly needed.
Special Events Co-Chairperson
Parent Advocate, Insurance Committee
Special Events Co-Chairperson
Program Assistant and
Kimberly Dunn Carolan
Parent Advocate, Social Work and Life Coaching
As an active volunteer with the Turner Syndrome Foundation, I contribute to patient advocacy with a degree in social work. Over the years I have volunteering experience with several organizations and received leadership training for children and adults. My younger daughter was diagnosed with Turner Syndrome at birth. With this added responsibility I was forced into a new dimension of motherhood to organize and manage multiple illnesses, doctors and medical records. Most importantly, I had to learn to be my child's advocate. All of these things have lead me to Life Coaching to help and encourage others. My family members are active contributors to the Foundation, and have teams running in the New Jersey Marathon and Rock 'n' Roll St. Pete Marathon.
National Council of State Leaders - Maine
Health and Wellness Coach
I am mom to two teens, Brooke who will be 19 years and a freshman in college, and Cameron who is 15 years and a sophomore in high school. I am a certified health and wellness coach through Real Balance Global Wellness where I have coached and guided many clients towards making healthy and beneficial lifestyle changes. I am also an Arbonne consultant, which is especially helpful since our daughter, Brooke, was recently diagnosed with celiac disease. We are now working on living a gluten-free lifestyle. Lastly, I am a cancer survivor and a firm believer in the wellness coaching I provide since it was how I was able to lose 80 pounds of stress weight and continue to follow the approach every day, along with a strong faith.
My daughter, Brooke, was diagnosed with Turner Syndrome at the age of 10 after a year of not growing. For six years we had no one to talk to in regards to this new information. Her providers did what they could to keep us aware of the particular areas to watch out for but emotionally on every other issue we had no one to talk to. I reached out to other organizations across the country and got little back. After hearing from Brooke’s doctor that they see Turner girls occasionally and that they believed many may be left undiagnosed, it caught my eye when I saw your website! I then saw how involved you were with forming teams and making sure awareness was getting out there. That is when I decided, “This is it! These are the people!” That is why I came to New Jersey to meet the people involved with the Turner Syndrome Foundation. It is my mission as a mother to bring awareness back to Maine. My goals are to help doctors reach the families missing out on a diagnosis and to help my daughter, Brooke. The more awareness there is, the more the wheels keep moving. I intend to reach our State House at some point this year and do whatever I can as a parent to help your foundation and our girls!
Patient Advocate, Special Education & Counseling
I am in my forties and was diagnosed at sixteen years of age with Turners Syndrome. I am the youngest of six children along with my twin brother Kyle. I have a great family who are very supportive. Born and raised in Paterson NJ . I never new TS existed before my diagnosis at UMDNJ where they helped me connect with other girls that also had Turner Syndrome. In my spare time I advocate and research for my benefit and others, and have been a volunteer with Turner Syndrome Foundation’s legislative activities in the State of New Jersey. I currently work as a Teacher Tech for the State of NJ and live in North Plainfield with my Husband Cameron.
Parent Advocate, Registered Nurse, MBA
National Council of State Leaders - Florida
Mrs. Jubelt held the role of past president and originator of TSSUS Florida Chapter and is parent of a 22-year-old daughter with mosaic TS. She is responsible for programs in the Southeast leading to early diagnosis of TS and recently promoting and facilitating a high-risk team of well-qualified physicians to facilitate delivery of newborn TS babies. She is very active in advocacy and promoting education and awareness working with physicians and medical professionals in the Southeast as well as families newly diagnosed and affected by TS. Mrs. Jubelt is CEO and managing member of APM Services, LLC, a Real Estate Investment Management firm. She has a BS in Nursing and Business in addition to an MBA (International Business) from the Crummer Graduate School of Business, Rollins College, Winter Park, Florida.
A major goal of Jennifer is to have a social group created for young women with Turner Syndrome. You never want to feel like you are alone in having your condition and when she was first diagnosed she didn’t have anyone like her to talk to about her condition. She proposed the idea of having social programs for others with the condition after participating in a research study where she for the first time met other young women with the condition. How does she feel that this will benefit others like her? She said, “I believe the social group will benefit girls with Turners because since there isn’t enough information out there, families and women with Turners don’t know where to turn to. There is a great need to share resources about finding knowledgeable doctors, enrichments, and having the opportunity to speak with others who truly understand. Just to have that kind of support is amazing. Everyone can say I understand, even a psychologist can say they understand, but in reality they have no idea of your feelings. I felt so alone that it would have been nice to talk to someone with Turners so they can help me and guide me. I don’t want any girl to have to feel all that I felt and go through depression. This is why this support group is amazing so girls have a friend that is exactly like them and can help them understand that it’s going to be okay.”
Jennifer is a recent graduate of Kean University and will pursue a PhD in child psychology.
Lic. Clinical Social Worker
National Council of State Leaders - Massachusetts
Parent Advocate & Special Fundraising
National Coucil of State Leaders - New York
Parent Advocate - Women's Group
National Coucil of State Leaders - Alaska
My daughter Ashley was diagnosed with Turner Syndrome early in the second trimester. We were not familiar with Turner Syndrome and did a ton of research and read anything and everything we could find. We were not only terrified, but astounded to learn that only 1% of female fetuses diagnosed with TS are ever delivered alive. We spent the next 6 months going to ultrasounds every week and praying there was no fluid developing. When they started to see fluid develop around her heart it lowered her chances of survival to .5 of 1%. We were devastated, but this little girl is a fighter and she proved it by making it to where she is today. The doctors were amazed that the fluid not only stopped accumulating, but went away. -- A true miracle!
Ashley is 10 years of age, and she is the 2014 Alaska Ambassador for The Children's Miracle Network and now I am the chairperson for the Turner Syndrome Foundation’s National Council of State Leaders for Alaska. Unique to Alaska, we are collaborating with Wade Marrs, friend and musher who is determined to dedicate his Iditarod miles to spread awareness of Turner Syndrome. Ashley's goal is to not only spread awareness but to show that these young ladies can do anything despite certain limitations, and can live a long and fulfilling life. I welcome Alaskan’s to join me in supporting this fine mission.
Parent Advocate and Educator
Cathy Cuttita grew up in Northern New Jersey and holds a Bachelors Degree in Communications. She is a Certified Elementary Education Teacher. Currently, she is working as a reading support specialist. Her passion in life is teaching and her goal is to be a successful advocate for each child in the classroom. She and her husband have three children, one of whom has Turners Syndrome. Cathy became a volunteer with TSF in 2008 before becoming a member of the Education Committee. She is committed to improving the lives of all TS girls.
NCSL - Wisconsin
My name is Brooke Schmidtke. I am a 20 year old who grew up in a little village called Rosendale in Wisconsin. I’m going to school for Certified Medical Assistant and Phlebotomy. Right now, I’m working as a CNA in a nursing home to help the elderly! I love taking care of others. It warms my heart to see the appreciation when you help them out. Little things to us are big to them! In my free time I like to read, hang out with friends, and travel!
Writer and Bi-Lingual Translator
My full name is Rebekah Joy Wallace, but I love to be called Bekah. I am 21 years old, and I was diagnosed with Turner Syndrome very shortly after my birth. Turner’s has presented its challenges and its frustrations, but it has also blessed me with a solid sense of self, fierce determination to triumph over obstacles, and a joy-filled love for the life God is allowing me to live. I live with medical concerns like lymph edema, hypoglycemia, and elevated liver enzymes but, at least in my case, they are not so intense that I have not been able to live healthfully and happily. I have no reason to believe that my future will not be the same. Certain skills and tasks, things that need a high level of coordination and which many (not all) others find to be second-nature, are painstaking for me. I can drive, I can ride horses, I can swim, but these motor skills require every bit of my concentration, and I don’t always do them very well. Math was always a struggle in school, too. It took hours of extra practice and studying. Not that I couldn’t do it, but it was hard and I still don’t like it. Writing, on the other hand, I have always loved. Ever since I was a little girl, I took great pleasure in scribbling down stories and keeping a diary. Writing for me is about discovering. I search for beauty, questions, flaws, and lessons worth sharing. Writing is a way for me to make sense of my thoughts, values, the world I live in, and how they all interact. Yes, you have to know something about a topic in order to write about it, but there is also no better way to learn. I write to stretch myself and hope that in reading what I write, others will stretch with me.
There is, of course, more to my life than Turner Syndrome and writing. I grew up on a dairy farm, the youngest of four siblings, one of whom has three very lovable children. I graduated from high school in 2012 and am now a Senior at Houghton College. Here I have double-majored in Writing and Spanish, and I am scheduled to graduate with a Bachelor’s of Science this coming December. After college I plan to serve as a substitute teacher while beginning online Graduate studies in Psychology through Southern New Hampshire University. My ultimate goal apart from continuing my writing is to become a translator for farms and small businesses who hire migrant workers from Latin America.
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