Introducing: Turner Syndrome Council on Cardiology

Turner Syndrome Foundation Cardiovascular Health Awareness Initiative

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

Every day, many lives are lost resulting from the cardiovascular issues present in Turner Syndrome. Because we believe every life matters and deserve the best possible care, the Turner Syndrome Foundation has organized a Council on Cardiology for Girls & Women with Turner Syndrome (COC) to address the complex cardiovascular issues that are seen in this vulnerable population. The COC seeks to tackle the gaps in diagnostics, treatments, transition, emergency episodes, and preventative cardiac care. It’s is our goal for specialists to become keenly aware of all the components in cardiac health in which Turner Syndrome patients are most susceptible, and to find the best care approach that will ultimately reduce the high fatality rate seen as a result.

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 the 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 donation is highly important and needed to reach optimal results. The hearts of these amazing girls and women are dependent on you. Please support!

MAKE A DONATION

  • ONLINE
  • BY MAIL: Click HERE to print and mail your form and your check (please do not send cash) to:

Turner Syndrome Foundation, Inc. PO Box 726, Holmdel, NJ 07733

  • Over the PHONE Ask for assistance: Call: 1-800-594-4585

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

Patient Education Workshop

Join us for the 6th Annual Turner Syndrome Foundation Workshop at Montefiore in Bronx, NY!

Workshop includes educational parent lectures, group activities for the girls, food and refreshments. Learn from university professors, clinicians and dedicated professionals. This is an event you do not want to miss! We are grateful to Dr. Leslie S. Lam, Interim Chief, Division of Pediatric Endocrine & Diabetes, and Susan Wesoly and staff for planning this wonderful event yet another year!

Event Details:

Date: Thursday, October 11, 2018, 4:00 PM EDT

Location: Children’s Hospital at Montefiore
The Grand Hall, Tishman Learning Center Gun Hill Road Entrance
Bronx, NY 10467

Lectures will start promptly at 4:15pm
Adult & Children Activities
Light meal served

Free to attend, advanced registration required! Donations appreciated!

Retreat Lake Walk: Everyone Welcome!

We want YOU to join us for a unique Team TSF event!

Join us on Sunday, September 23 for a Team TSF 5K lake walk to support Turner Syndrome awareness! All ages and fitness levels are welcome to attend! Come as an individual or bring a team – everyone is invited to raise awareness for Turner Syndrome! Please note: Due to the nature of the course, unfortunately strollers will not be permitted.

What: Team TSF 5K Lake Walk
When: September 23, 2018 at 11am
Where: YMCA Camp Ockanickon, Medford, NJ
$35 registration fee includes team t-shirt while supplies last!

  

There are still a few spots left for the Autumn Retreat weekend! Contact agratton@tsfusa.org if you are interested in joining us!

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

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.

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