Introducing: Turner Syndrome Council on Cardiology

Introducing a New Turner Syndrome Foundation Cardiovascular Health Initiative

Cardiovascular health is a major concern for many people. Heart disease is the number one killer of women in the United States, with cardiac issues leading to death in 1 in 4 women. Given the high prevalence of heart disease among women of the general U.S. population, cardiac concerns among Turner Syndrome (TS) patients are even more striking, about 25-50% of TS patients suffer from some sort of heart problem.

Every day, lives are lost to the cardiovascular issues present in Turner Syndrome. To combat this issue, the Turner Syndrome Foundation has organized the Turner Syndrome Council on Cardiology (COC), a council of industry leading professionals to address the complex cardiovascular issues of this vulnerable population. The COC seeks to tackle the gaps in diagnostics, treatments, transition, emergency episodes, and preventative cardiac care. It is our goal that specialists will become knowledgeable on the components of cardiovascular health that affect Turner Syndrome patients in order to find the best care approach, ultimately reducing the high mortality rate.

This project honors all the precious lives that are burdened and lost due to cardiac problems. It is our mission to prevent further suffering and loss by equipping allied professionals with the armor of knowledge and resources to optimally address cardiovascular issues in Turner Syndrome patients.

The COC can only be possible with your contribution. You don’t have to be a doctor to save lives, your support is highly important and needed to reach optimal results. The hearts of these amazing girls and women are dependent on you. Please support this initiative joining the COC Campaign.

Council on Cardiology Campaign

Our most sincere condolence to the friends & family of Turner Syndrome woman, Andrea Eden Levey, who passed away on Thursday, October 4th, 2018 from complications of aortic dissection.



Professional interest in the COC? Please submit a form below.

Rally for Medical Research

Advocating for Turner Syndrome is very easy: Put on a good pair of shoes, meet up with the group and tell your story!

Join us at Capitol Hill on September 12-13th and meet legislators to raise awareness and advocate for Turner Syndrome.

SIGN UP: https://www.jotform.com/tsfusa/2018-rally-for-medical-research-wdc

Rally for Medical Research 2018

 

 

A Stellar Video: This is my story

Eager to spread awareness of Turner Syndrome, Stella decided to share her Turner Syndrome journey. This courageous and beautiful young lady is making a difference. Watch her video, read her story and be inspired! 

Don’t let anyone discourage you from being the best version of yourself. Turner Syndrome does not limit you to be great, and like Stella said: “it’s very easy to prove [anyone who disagree] wrong.”

You can learn more about Stella’s story at the link below.

CLICK TO READ STELLA STORY

NEXT STEP:

TAKE ACTION. Interested in getting involved? Email volunteer@tsfusa.org or call 732-847-3385 for assistance.

What’s your plan of action after receiving a Turner Syndrome diagnosis? Leave your comments below, navigate through the “PATIENT” information tab.

Back to School Guide

Back to School

Back to School

It’s that time of the year again – summer is coming to an end and parents are getting their children ready to go back to school. Every student follows a similar checklist such as buying new notebooks, packing up a backpack, and reviewing their new schedule. For Turner’s girls, adding a few more things to that checklist can help ensure that the school year goes smoothly.

Turner Syndrome is characterized by learning issues, which can include visuospatial organization and math abilities. It’s important that educators, school psychologists, and school nurses are aware of the implications in the classroom and are prepared to collaborate for the best outcome.

To help you with the transition of returning to school this year, we’ve created two guides! For older students, we have the Back to school Survival guide,” which features a checklist of items you may have forgotten – like checking in with your school psychologist or purchasing your Emergency Contact Card! This is especially great for students making the transition to a new middle or high school!

For younger students, we have the Super Student Adventure Guide Going back to school doesn’t have to be a negative experience and this guide will help make it fun! With a superhero printable to color and kid-friendly checklist, going back to school this year can be an adventure!

Be sure to check out our website for more learning resources at https://turnersyndromefoundation.org/professionals/educators/learning-2/

Encourage your teachers to visit, too, to ensure they have all of the knowledge necessary to assist your student!

Good luck this year! We hope it’s the best one yet!

Question? Contact info@tsfusa.org or call 732-847-3385 for assistance.

In-Kind Donation Request

in-kind donations

The last few months of the year are particularly important for nonprofits. Americans become increasingly generous as the summer months come to a close and we enter the holiday giving season. According to Network for Good, 12% of annual giving occurs in the last three months of the year, with 31% occurring in December alone. In fact, the week between Christmas and New Year’s Eve is when most donations are made as donors hurry to meet tax-deduction cut-off dates.

All of this giving allows nonprofit organizations to enter a new year strong, with necessary funds to drive new and existing programs.  However, with many nonprofits vying for donors’ attention, competition can be fierce. You can help the Turner Syndrome Foundation stand out this appeal season with an in-kind donation. In-kind donations will be raffled off in a silent auction to encourage individuals to engage with the Turner Syndrome Foundation and, more importantly, motivate them to give to an important cause.

Studies show that 86% of individuals consider a company’s commitment to a social issue when deciding which brand to buy. Likewise, 74% of individuals take this into consideration when recommending products to others. With more than 10,000 visitors to our website each month and an additional 10,000 followers on Facebook from across the United States, this opportunity offers widespread brand recognition and a chance to showcase your company as a compassionate business that cares about women in their workforce and community.

With your generous support, Turner Syndrome Foundation will continue to fund life-changing programs that make a difference for all women and girls affected by Turner Syndrome.

To submit an in-kind donation, please complete this brief form and a staff member will reach out to you shortly. Thank you for you support!

 

North Carolina Community Potluck

North Carolina Community Potluck

Turner Syndrome Foundation supporter, Audrey Jones, is organizing a potluck event to bring the North Carolina and nearby Turner Syndrome community together. This casual event is for individuals, families, and friends who have or are connected to Turner Syndrome to meet up for some great food and to celebrate the beginning of fall and the school year. All who attend should bring a small dish to share potluck style. Hot dogs, burgers, veggie burgers, and drinks will be provided. BYOB is encouraged but no alcohol is permitted in the park.

Guests are encouraged to bring friends, family, and activities for children–there is also a playground adjacent to the shelter.

 

Media coordinator, Olivia, shares the excitement of this fun community event.

EVENT INFORMATION:

Anderson Point Park Small Picnic Shelter
20 Anderson Point Drive
Raleigh, NC 27610

CLICK TO REGISTER: https://www.jotform.com/tsfusa/nc-TS-community-potluck

The Turner Syndrome Foundation has been invaluable as a supporter of my research and the many girls and women who rely on its vast array of services. I would love to give back to the Foundation for all the help they have given me and the individuals and families whose voices I hope to share through my work.

Event Host:

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

My First 50 Miler Experience

Team TSF Coordinator, Rachel Belmont, shares her experience running a 50 miles ultra marathon  Through her story, she explains “why running an ultramarathon is the greatest, but also most challenging thing you can do for yourself.” Check it out.

Running a marathon is an achievement within itself, one that gives you bragging rights, if you will. Although this 26.2 mile distance is very challenging, there are runners who want an extra push, which is how the ultramarathon was born. An ultramarathon is any race distance over 26.2 miles, and includes popular races such as 50k’s, 50 milers, and the coveted, highly venerated 100 miler. In 2017, I decided to make the jump from marathon to ultramarathon, signing up for my first 50 miler that May, the North Face Endurance Challenge in Washington D.C. Training for the race was brutally challenging, requiring me to run double back-to-back long runs each week. For example, I would wake up early on a Saturday morning to run 22-27 miles, then run a “shorter” long run of 12-15 miles the next day. One Saturday morning, I woke up and ran 32 miles, my longest run yet. Finally after months of training, I headed to D.C. to take on my first ultra, a completely different animal compared to any other race I’ve ever done. I could barely sleep the night before, with mixed emotion of nerves and excitement keeping me up. Would I finish before the 13-hour cutoff? What will the course be like? What is going to happen to this perfectly intact body of mine once I am done? Finally, after 2 brief hours of sleep, I woke up at 2:30 am to catch the shuttle to the start at Algonkian Regional Park. At exactly 5am the gun went off, before I darted into the pitch-black woods…headlamp illuminated, camelback filled, legs racing, heart on fire. The first few miles were quite peaceful. There was a full moon out, as me and a couple hundred other runners raced along the trails. This was unlike any marathon I had ever done. It felt a lot more like an adventure than a race.

For the first 25 miles, I kept a steady pace, feeling good throughout my journey so far. However, about mid-way in the course required me to repeat loops of long, steep hills at what felt like every turn. I had not done any hill training before the race, a plausible explanation for why I suffered so much during those loops. At mile 32, I was forced to stop and sit down at one of the aid stations, because of how much pain my legs were in, and how sick I felt. Luckily, there were 2 other runners who stopped at the aid station as well, asking me if I would like to run with them. I gladly accepted, having hope that I would eventually finish under 13 hours. Together, the 3 of us worked as a team, taking turns running ahead to pace one another, and providing each other with water, salt tab pills, and food.

We eventually picked up other runners who were struggling as well, expanding the size of our group. Running with others made ignoring the excruciating pain a lot more feasible. Instead, I kept focusing on the conversations we were having with one another…why we started running, other life goals, etc. The bonds I made with these strangers will last a lifetime. After 11 hours of hard, painful, and relentless effort, I successfully crossed the finish line of my first 50-mile ultramarathon. The feeling was overwhelming. A mix between relief, victory, sweat, adrenaline, passion, and pain. The pain, yes, that was the most memorable. The pain I felt after running 50 miles on trails, in 98-degree heat was more uncomfortable than anything I have ever put my body through. It was pure hell, but I had made it out alive.

Although my limbs felt nearly paralyzed after the race, I was never happier, or prouder of myself than I was in that moment. I had finally overcome the barrier, transforming from marathoner to ultramarathoner in just 11 hours. That race gave me so much confidence to take on anything that challenged me from now on, regardless of how terrified I was.

Putting the pain aside, running my first ultramarathon introduced me to remarkable people while pushing me to overcome any known limitations I had previously set on my body. Most importantly, running 50 miles taught me that limitations are not physical, therefore, with a tenacious mind and determined attitude, you can overcome any barrier ever set on yourself.

Inspired by Rachel’s story? Leave your comments below. Interested in joining Team TSF? Check all the races going on around the country and raise awareness of Turner Syndrome. Click on the link below, and go to the second part of the form to see all the races. Contact teamtsf@tsfusa.org if you have any question.

Online Shopping

https://turnersyndromefoundation.org/become-supporter/give-now/shop/
TSF merchandise, books & educational resources, and awareness items to help make your fundraiser a success! Visit the TSF store to see more!

Goddess Garden Organics Supports TS Weekend

Thank you, Goddess Garden Organics, Autumn Retreat Sponsor!

Big thank you to Goddess Garden Organics for supplying sunscreen for the Turner Syndrome Autumn Retreat! The Autumn Retreat will be held on September 21-23, 2018 at YMCA Camp Ockanickon in Medford, NJ. This event is exclusive to women, girls, and families affected by Turner Syndrome. The agenda includes group activities, professional presentations, and a team 5K Lake Walk.

“With outdoor activities planned, sunscreen is a necessary addition! Goddess Garden Organics’ support will help offset program costs to keep funds where they are needed most,” said Program Development Coordinator of Turner Syndrome Foundation, Alexis Gratton. “Goddess Garden Organics donates to a number of charities each year, and we are grateful to be one of them in 2018.”

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. To learn more, visit www.TurnerSyndromeFoundation.org

About Goddess Garden Organics

Goddess Garden was started by a mother who wanted a safe sunscreen option for her daughter’s sensitive skin. The Colorado company is still family-owned and just as focused on providing the most natural, gentle coverage possible, which means being free from chemicals that are harmful to people and the planet! They are active in gathering support for Hawaii’s new ban on reef-harming chemical sunscreens and are also a B Corporation with vegan, certified cruelty-free and reef safe products. To learn more, visit https://www.goddessgarden.com/

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

Running the NJ Marathon with TSF

Running the 2018 NJ Marathon was one of the most memorable races of my life. In addition to completing the race in 3 hours 26 minutes, I also re-qualified for the Boston Marathon, matching my personal marathon record I ran over 2 years ago, before having my 3rd and final knee surgery. This was a significant moment for me, because since having that knee surgery, I found it challenging to gain my speed back again. Even more memorable was running this marathon for the Turner Syndrome Foundation, an organization I started working with a few months ago as a part of an internship requirement at my school, Monmouth University.

Working for the Turner Syndrome Foundation opened me up to the idea of advocating this cause that empowers and spreads awareness of women with Turner Syndrome, to help them achieve the best, most beautiful version of their best self. I became inspired by the women with Turner Syndrome that we raised money for, making me want to become a fundraiser as well. As someone who has completed 7 marathons, (including a 50 mile ultramarathon), and working with other running charities such as Team for Kids and Achilles International, I felt like this was my calling to take on the initiative of transforming my role within the Turner Syndrome Foundation. I went from staff coordinator to active fundraiser, having raised $150 so far for this remarkable non-profit that benefits some of the strongest women known.

However, I am not stopping at the NJ Marathon. I currently have a goal to run a marathon on every continent, something I have wanted to complete even before I started running marathons 3 years ago. Although this goal is something personal, bringing attention to myself, I want to use it as a strategy to bring awareness to the Turner Syndrome Foundation as well. By completing marathons all over the world, I hope to not only inspire girls and women with Turner Syndrome to lead active, healthy lifestyles, but to introduce TS to people who may be unaware of its effects. Such effects can include infertility or heart complications, affecting 1 in 2000 females. Whether I raise $200 or $2000, I truly believe that by tackling a goal I have always dreamed of, while doing so in support of these women, everything done or raised will make a significant impact on the lives of those affected, or know someone who is affected by TS. Currently, I have mapped out 3 of my continents to complete over the next year, which include the Petra Desert Marathon in Jordan (western Asia) and Dublin marathon (Europe) which I have officially registered for. I will potentially be running a marathon in Morocco (Africa) as well next year. I’m so excited to not only be a apart of the Turner Syndrome Foundation, but to be able to do something I love while giving back to a community of inspirational women, I’m thankful to have had an excellent NJ Marathon experience, and am looking forward to running more races with Team TSF in the near future!

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