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Welcome Back Advocacy Coordinator, Liz Carmines!

TSF is happy to welcome Liz Carmines back to the team as Advocacy Coordinator! In this role, Liz will be working one-on-one with YOU to connect you with an opportunity to take action and raise awareness. Liz spent the past year abroad learning about community development. Now she’s ready to share her knowledge with you!

I previously served as TSF’s Advocacy Coordinator as an undergraduate student at Monmouth University. (You may remember me from the Canvassing 101 video!) In that time I learned about Turner Syndrome and the needs of the community, and became passionate about raising awareness of TS and advocating for affected women and girls.

After graduation in 2018, I left to join the Peace Corps as a Youth Development volunteer in Morocco. I spent nine incredible months experiencing the Moroccan culture, becoming integrated in a rural community, and learning about strategies for youth engagement and community development. While it was a great experience and one I will never forget, I came to realize that I needed to return home. Thus, I packed my bags to come back to the US. I feel grateful to be continuing work as Advocacy Coordinator at TSF to be able to apply the knowledge I gained during my time in Morocco.

The needs of women and girls affected by Turner Syndrome are important, but unfortunately they are often overlooked. Every population deserves a voice, and the opportunity to represent the TS community through advocacy gives me great pleasure. I encourage you to join me in taking action to raise awareness of Turner Syndrome. Women, families, caregivers, legislators, community leaders – there is a volunteer opportunity to everyone at TSF. It does not take much to make change, and each person can have an impact, even in a small way. I look forward to the opportunity to build upon the community of passionate volunteers at TSF to come up with innovative new approaches to advocacy.

If you are interested in getting involved, please reach out to me at lcarmines@tsfusa.org.

You can access our helpful Awareness Toolkit that includes materials to get started here: https://turnersyndromefoundation.org/volunteer-3/awareness/. Additionally, our Advocacy Packet that focuses on getting started with legislative advocacy can be found here: https://turnersyndromefoundation.org/volunteer-3/advocacy/public-advocacy/.

Lessons Learned in Research

In celebration of the ten year anniversary of receiving her PhD, TSF Director of Research, Danielle Moore, shares the lessons and insights she’s learned as a medical and scientific researcher.

Celebrating Lessons in 15 Years of Scientific and Medical Research from a Turner Syndrome Diagnosis

By Danielle Moore, PhD, TSF Board Member & Director of Research

  1. Expect the unexpected result in advance.  Plan for as many different potential answers as possible.
  2. Trying and learning something new is exhilarating.  Push boundaries and grow.  Have patience and expect a learning curve and failed attempts.
  3. Mistakes and failures create the deepest lessons. Experiments fail and turn out extremely differently than we expect. 
  4. Do not trust and believe experimental results until they are repeated and statistically significant more than twice. 
  5. Ask new and separate questions from others to avoid research competition and spark new interest and enthusiasm. 
  6. People are not guinea pigs for research – they are precious and loved pieces of creation.  Their contributions are selfless and heroic.
  7. Laboratory animals deserve kindness, and stimulation, and gratitude, and comfort.  Careful and ethically approved animal research saves lives every single day.  
  8. Network.  Avoid social isolation in research to open collaboration and grow your ideas.  Two are better than one. Three are better than two. 
  9. Celebrate every step of progress and victory and growth.  
  10. Prioritize balance of work and play.  Balance family and time off with science.
  11. Never give up – set a time table of days for recovery and dive back in with a fresh perspective.  Plan the next step and keep moving. 
  12. Balance short term and long term planning for project development.  Set daily goals, and weekly goals, and monthly goals, and quarterly goals, and yearly goals. 
  13. Never forget that the goal of research is to increase our understanding to help make this world better and make other people’s lives easier and increase our understanding of the awesome creation around us.
  14. Accept but fight limitations in technology and technique and process.  Apply and absorb lessons learned and celebrate that growth.             
  15. Embrace a fresh start and new direction and new beginning and new question with open and child-like excitement. 

Research is a team effort. A greater interest in TS research can help eliminate disparities and improve treatment options. Take action by joining or sharing the TSRX today!

Time is Running Out! Register for the Autumn Retreat

Time is running out to register for the Autumn Retreat! Don’t miss this opportunity! A weekend all for you! 

We know just how important it is for women, girls, and family members affected by Turner Syndrome to have a community of support they can turn to. Our main goal is to do just that – to give you a space to meet and connect with others who are most likely experiencing the same struggles and successes. As a past TS camp attendee said: 

“Bonding with that group felt seamless. The commonality of our medical condition played a part, but I believe something deeper was at work. A combination of shared struggles and a desire for support united us. The resulting relationships have helped me to embrace my condition.”

We’re counting down the days until this year’s Autumn Retreat on September 20-22 in Medford, NJ! This camp weekend for women and girls affected by Turner Syndrome is truly one-of-a-kind! The cozy and casual setting sets the stage for instant connections and friendships that will last long after the weekend ends! 

In 2019, we’re proud to announce two incredible speakers! On Saturday morning, former Mrs. New Jersey, Crissy Timpson, will be sharing her experience in goal-setting and dream-chasing! Crissy has been in the pageant world since 2009 (earning many titles) and knows firsthand the power of visualizing your dreams and staying positive. She can’t wait to share an inspiring talk with you! 

In the afternoon, we’ll welcome Dr. Alexis Capozzoli, a pediatrician and woman living with TS. Dr. Capozzoli will speak on the care milestones to know for every life stage – from childhood to adulthood. Learn from her experience and expertise in this insightful presentation! Come prepared with questions! 

Now that you’ve gained all of that great information, it’s time to get moving! The schedule is full of opportunities to get outside and have some fun! Canoeing, an adventure course, and more – there is something for everyone! Nature lovers will be especially thrilled to take part in the Team TSF Lake Walk fundraiser on Sunday afternoon! Invite your loved ones to join us on Sunday to raise awareness! When it’s time to unwind, we’ve got you covered! From a campfire & s’mores to peaceful morning yoga, you’re sure to leave this weekend feeling your best! 

I’m ready to register now! 

Questions? Contact agratton@tsfusa.org or call 732-847-3385 

TS Podcast: The Butterfly Pod

butterfly pod

Brooke Caron and her mom, Kathy, are veteran volunteers of the Turner Syndrome Foundation! They’ve been successful in raising awareness of TS, even getting Turner Syndrome Awareness Month declared in their home state of Maine. Now they’re getting creative with their awareness efforts with a new podcast, The Butterfly Pod!


I am Brooke Caron, and I was diagnosed with Turner Syndrome at 10 years old. Even before finding out, my family have been my biggest supporters. Growing up, my parents always had my best interest in mind. When I began showing developmental delays in my height in elementary school,  it was only natural for my mom to do whatever she could to figure out what was wrong. Since our home state of Maine is fairly undereducated about Turner Syndrome, my diagnosis brought about a long journey. My mom and I fought to find proper care and receive answers as new health concerns like Hypothyroid and Celiac developed, and old ones like continuous ear infections became connected to Turner Syndrome. 

Taking Action

It became abundantly clear very quickly, even to an elementary age child, that something had to be done to make people, especially doctors and teachers, more aware of this chromosomal disorder. My mom and I both wanted to do something to make sure fewer families had to live in the same doubt and uncertainty we did as I was growing up. Although we wanted to raise awareness, my mom and I hardly felt equipped to do so the first year or two following my diagnosis. We hardly knew enough about the condition to properly advocate for it, so my mom decided to do the next best thing. We didn’t have the knowledge to do anything on our own, but my mom decided to find someone who did.

My mom found the Turner Syndrome Foundation. After talking with TSF and attending a Team TSF event in New Jersey, my mom felt inspired to get Turner Syndrome Awareness Month declared in our state. Well, we accomplished just that and February is now officially TS Awareness Month in Maine! Not long after, I decided I wanted to do more to bring awareness to TS. While focusing on high school and college, I looked for more opportunities to get involved. I interviewed with a local health blogger, Diane Atwood, and worked with the Turner Syndrome Foundation to conduct phone interviews with women who also have Turner Syndrome.

Creating the Butterfly Pod

Around my third year of college, my mom and I slowly began to grow very interested in podcasts. We eventually decided we wanted to host a podcast to bring more awareness to Turner Syndrome. Our goal is not to just give facts, but have some fun as well. There are no shortage of topics to talk about, and a number of people we hope to interview. We decided to call it “Butterfly Pod,” after the butterfly symbol for TS.

It was tough to start, but we didn’t give up! I was still in school and working part time, and the recording equipment cost some money. My mom spent a lot of time studying other podcasts and gathering tips, but it was a struggle to get the episodes onto iTunes. About a month ago, we managed to finally get the episodes on iTunes! To date we have five episodes covering a variety of topics with a six coming towards the end of September. These episodes cover an introduction to our family, what Turner Syndrome is, my personal story, the story of a friend, Holly, who also has TS, and Celiac Disease, which I have.

Listen Now!

You can find the our podcast easily by searching “Butterfly Pod podcast” on iTunes! My mom and I can also be reached on Instagram: @Butterflypod_04 or Twitter: @Podbutterfly. Although it’s taken a lot of work, we truly enjoy raising awareness and hope to continue doing so!              


Join Brooke and Kathy in raising awareness today! Request your copy of the Awareness Toolkit to learn about the many ways you can get involved!

“When Was Your Last Period?”: A Few Things to Consider When Seeking Adult Care for Turner Syndrome

by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF

Living with Turner Syndrome

I live with Turner syndrome. I was diagnosed at the age of 15. I am now almost 48. I saw the same Ob-Gyn, who guided me through my diagnosis and follow-up care from specialists, from the age of 15 to 37 when I participated in a Turner syndrome study at the National Institutes of Health. Since then, I have had to find health care across the far corners of the United States. I have had the Turner syndrome conversation more times than I care to recall. Inevitably, the first question asked by medical professionals during most doctor’s appointments is, “When was your last period?” This introduces the discussion of Turner syndrome and hormone replacement therapy immediately into our conversation. It also reveals how little, in general, the medical establishment knows about the condition. Perpetual education is part of the process. Experience has provided insight into how to navigate the confusing and frustrating waters of adult Turner syndrome health care.

Know Your Body

Make sure you know your body. Be able to provide as much information as possible about the ways in which Turner syndrome presents in your body as the condition is different for each woman. For example, have an understanding of your current bone density, fertility journey, heart and kidney condition, and hearing level. Also, a record of all past care is particularly important to have as teams of providers address specific Turner syndrome-related needs. It is always important that medical professionals know the whole story, but it is particularly helpful when living with Turner syndrome.

Find Experienced Doctors

It makes a huge difference to see doctors who regularly treat women living with Turner syndrome. This might be difficult but try to make it happen. When you see a doctor that sees women living with Turner syndrome, you don’t have to explain the basics. They will have a better understanding of the connection between Turner syndrome and conditions like infertility, menopause, osteoporosis, hearing loss, and heart and kidney issues. The older I get, the more important this is becoming.  

Coordinate Care

Like finding experienced doctors, coordinating care can be complicated. After many years in the darkness of coordinating my own care, it makes a huge difference to have doctors who work within the same system. The weight of self-advocacy is lightened. From the basics of sharing records, to the more sensitive process of determining treatment plans, it helps to see doctors who work directly together. I found a regional Turner syndrome center at a large university through contacting the endocrinology department at a local university medical school. I have been a patient at the center for three years. I have been able to coordinate an annual visit during which I am seen by an endocrinologist and a cardiologist and receive bone and heart testing. Each year, specialists determine what care I need. I have to drive 5 and a half hours for my appointment and stay overnight in a hotel. It is worth every minute and mile to me. That level of communication is tremendously informative and reassuring. Talk with a local (or regional) university medical school and see what resources are available in your area.

The Good News

The good news about adult Turner syndrome care is that we are learning more and more each year, and general awareness about the condition is improving. In my personal experience over the last several decades, I have seen treatments develop for a variety of issues that particularly impact women living with Turner syndrome. That is hopeful to me. As we learn more and more about genetic conditions, in general, the Turner syndrome community benefits. Awareness increases, negative stereotypes decrease, and treatments improve. That is hopeful to me, too. The community strengthens as we get and stay healthy and share our story.      


Katie shares the importance of raising awareness to improve access to care for women with TS. Request an Awareness Toolkit today and get involved in awareness efforts! What can you do to support Awareness Month this year?

Tools for Going Back to School

Back to School

The start of Fall is about more then heading back to school. It means getting back to our usual routines. For girls and women with Turner Syndrome, it can be especially important to establish routines, and doing so can help ease some of the difficulties that are typically associated with TS. These include nonverbal learning disability (NLD), anxiety, depression, and issues with social skills. Luckily, there are steps you can take to make this a great school year or season!

School-Aged Girls

For girls, establishing a routine will help develop effective long-term habits in the classroom. These include:

  • Creating a study schedule to follow
  • Organizing classwork with a binder for each subject
  • Prioritizing with a to-do list that includes schoolwork as well as chores, activities, and more
  • Set up a dedicated workspace that will eliminate any distractions
  • Consider a homework partner who can help with organizing assignments, task division, and time management
Heading Off to College

Congratulations! You should be so proud! At this point, students have probably formed some great study habits, but we have some tips for a smooth transition into this next exciting chapter!

  • Plan ahead and seek guidance so you have a clear sense of what to expect in this new life stage
  • Speak to the school and your professors about services you may need, such as extended time on tests and the use of a word processor for writing assignments
  • Having an emergency contact card can offer peace of mind in a new, independent setting. An emergency contact card can speak for you in the event that medical care becomes necessary.
  • A college setting offers many opportunities for social interaction. Read our page on social skills to help develop productive communications.
Tools for Teachers

The TSF website is full of resources for educators, social workers, administrators, school nurses, and more! Explore our education pages and register with TSF to receive tools and updates to help you advocate for your students.

Have tips that helped you and want to share with the community? Leave them in the comments below!

Research Opportunities

Turner Syndrome Research eXchange

Research is a team effort. The more people that are on the team, the more effective research can be. It is important for all women, girls, and family members affected by Turner Syndrome to contribute to clinical trials in order to provide researchers with a clear picture of the cause, impact, and treatments of TS.

Below we’re sharing two research opportunities that are directly connected to the larger medical community. There’s power in numbers. Increase visibility and research interest of Turner Syndrome when you choose to contribute today.


TSRX

The Turner Syndrome Research eXchange (TSRX) is a patient-centered research registry, or Patient Insights Network (PIN). A PIN is an online platform where individuals can take surveys, upload medical records, track health outcomes, and learn about the latest research. A PIN is different from a traditional research registry because participates own 100% of their data. You choose whether you’d like to share your data with the medical community or not. In addition, all identifying information is removed from the data to protect your identity.

Why Are the Benefits of Joining?

When you contribute to the TSRX, you are contributing to the global Turner Syndrome community. With your permission, your de-identified data is shared with researchers and medical investigators. The more researchers know about TS, the sooner they will be able to find answers. Help researchers help you.

Turner Syndrome Research eXchange PIN

Your information can also be shared with pharmaceutical and biomedical companies. When these companies understand TS and how many people are affected, they are more likely to invest in corresponding research studies. Overall, the TSRX can generate research interest to influence the future of TS care and treatment options. Make sure your experience is a part of the story.

The TSRX offers immediate benefits to you, too! After taking a survey, you can see how your responses compare to the de-identified data of other participants. You’ll be able to see how others with TS are managing their health in real-time. You can also opt in to receive information about research opportunities and clinical trials that match your responses.

How Do I Join?

All patients are caregivers are encouraged to join the TSRX and make their medical information count! Visit www.TSRX.us and register today!


NIGMS Human Genetic Cell Repository

The National Institute of General Medical Sciences Human Genetic Cell Repository was established in 1972 by Coriell Institute for Medical Research. The Repository contains more than 11,700 cell lines and represents a variety of disease states and chromosomal abnormalities.

A cell repository stores cell lines for use in research. To make a cell line, human cells are taken from a blood or tissue sample and placed in a container with a growth solution in a process called cell culturing. Cultured cells can then be harvested, frozen, and stored. Scientists can access banked cells and use them for a variety of purposes, including: finding new genes, studying how cells function, and developing new ways to diagnose, treat and possibly prevent genetic diseases. 

Why Should You Contribute?

The lack of availability of human cell and tissue resources for scientists is a major barrier in finding treatments for genetic diseases. When you donate a sample, you make it possible for scientists across the globe to learn more about genetic diseases. Testing candidate drugs or therapies using donated cells can help scientists determine which approaches are most likely to work and be safe enough to test further in human clinical trials.

Like the TSRX, your privacy is taken seriously. Identifying information is removed from samples and replaced with a code number. At any time, you can ask that your samples be withdrawn.

How Do I Join?

To donate either a blood or biopsy (skin tissue) sample to the NIGMS Repository, you or your child must have an inherited genetic disease or chromosomal abnormality. Contact Tara Schmidlen, MS, CGC at 856-757-4822 or tschmidl@coriell.org to inquire about eligibility and state that you would like a collection kit sent to you. Read more about the Repository.

Pfizer Sponsors Turner Syndrome Camp Weekend

Thank you, Pfizer, Autumn Retreat Sponsor!

Turner Syndrome Foundation is pleased to announce that Pfizer is a sponsor of the Turner Syndrome Autumn Retreat for the second year in a row! The Autumn Retreat will be held on September 20-22, 2019 at YMCA Camp Ockanickon in Medford, NJ. This event is exclusive to women, girls, and families affected by Turner Syndrome. The Autumn Retreat is poised to foster an environment in which new relationships can develop and thrive while providing educational opportunities to promote a broader and deeper understanding of Turner Syndrome. The agenda includes group activities, professional presentations, and a team 5K Lake Walk.

The generous support of Pfizer will ensure the success of this life-changing experience for Turner Syndrome women and girls. “We are thrilled to have Pfizer’s support for this event! With focus areas like growth hormone deficiency, cardiovascular health, and women’s health, it’s easy to see why Pfizer is a good fit for our mission,” said Program Development Coordinator of Turner Syndrome Foundation, Alexis Gratton. “We are also happy to partner with Pfizer due to their commitment to improving patient care through quality healthcare and education – much like TSF.”

About Turner Syndrome Foundation

The goal of the Turner Syndrome Foundation is to support research initiatives and facilitate education programs that increase awareness and enhance medical care of those affected by Turner syndrome. Early diagnosis and comprehensive treatments over the lifespan may lead to a brighter and healthier future for all young girls and women with Turner syndrome. Turner Syndrome Foundation collaborates with patients, physicians, educators, legislators, and researchers to fulfill our mission through our four program areas of awareness, advocacy, education, and research. TSF serves more than 20,000 individuals through our patient and professional education workshops, national awareness athletic events, research registry, and open-access education resources. To learn more, visit www.TurnerSyndromeFoundation.org

About Pfizer

Headquartered in New York City, Pfizer has more than 150 years of experience developing products to improve and extend lives. Pfizer’s portfolio includes medicines, vaccines, and some of the leading consumer healthcare products. As a leader in biopharmaceuticals, Pfizer is also dedicated to giving back. To learn more, visit www.pfizer.com

Interested in joining Pfizer as a sponsor of this incredible weekend? Contact Alexis Gratton at agratton@tsfusa.org

Join Samantha at the Autumn Retreat

Samantha will be joining us at this year’s Autumn Retreat! We asked Samantha to share a little bit of what this opportunity means to her:

“I was diagnosed with TS at age 8. I never had any support system and was never around others with TS until recently. I am now 30. It has made for some trialing times, but I have overcome those trialing times and am now so ecstatic to be a part of such an amazing organization. I have made some amazing TS friends, and hope to continue with new adventures and continue to make new relationships with other women with Turners. These events truly inspire me, they help me realize and know I am not alone in this fight. That is exactly what TS is everyday, a fight. In this fight though we have each other, and together we are always Turner strong. This helps me make it each day in this life.”

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The Autumn Retreat was designed with you in mind. As Samantha says, you are not alone and we created this event to help you feel supported. At the Autumn Retreat, you’ll connect with other women and girls who understand your Turner journey because they’ve been through it, too. From icebreakers to help everyone get to know each other, to group games and activities that encourage everyone to work together, you are sure to leave this weekend with a new friend.

One of our favorite moments from last year’s Retreat was the rock-climbing wall. This activity pushed our group outside of their comfort zone – even helping some to face their fear of heights! We were so proud of those who decided to give it a try, and even more proud of the community and support on the ground. Our group cheered on each individual brave enough to take on the rock wall – helping them reach a little higher! The energy, smiles, and support of this activity represent what you can expect to experience when you attend this year’s Autumn Retreat! Register now – spots are filling fast! 


REGISTER NOW

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