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.

Merchandise

merchandise

Pampered Chef Fundraiser

Pampered Chef is supporting the Turner Syndrome Foundation with a fundraiser! Up to 15% of the total proceeds will be donated to bring change to the TS community.

You may place an order anytime using the link below:
pamperedchef.com/party/TurnerSyndrome

If you have any questions you may contact:

Marianne Hand
Director, Pampered Chef
845-274-3736 text or call
marianne.hand@outlook.com

Give Meaning to Your Next Summer Party

We hope all of our friends in the U.S. and Canada enjoyed their holiday last week! Many of you probably spent some time barbecuing, hanging by the pool, and gathering with friends & family. Did you know your next summer bash could benefit Turner Syndrome Foundation? That’s right, you can turn your next BBQ, pool party, lake day, or beach day into a fundraiser for TSF!

How does it work?

  1. Complete the Event Form and a member of the TSF staff will contact you shortly
  2. Invite friends and family
  3. Ask guests to make a donation to TSF
  4. Brainstorm ways to make fundraising exciting, like asking a local business to donate a raffle item!
  5. Submit your donation and beam with pride! You may even be featured on the TSF website!

Why is fundraising important?

Fundraising makes everything we do possible! All of our resources, events, and more are made possible by the generous donations of supporters like you! We couldn’t do it without you! Lucky for you, fundraising doesn’t have to be all business, it can be fun – like hosting a pool party in support of TSF! Not a fan of the pool? Barbecue not your thing? Host an event that’s meaningful to you! Like a charity soccer game, golf outing, or wine night. We can’t wait to see what type of event you choose!

Read More

Other Summer Fundraiser Ideas

More Ways to Fundraise

Goddess Garden Organics Supports the Autumn Retreat

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!

Overcoming Labels: How ONE Sixth Grader Opens Up About Having Turner Syndrome

By: Rachel Belmont

It takes a strong, resilient, and driven person to overcome a label that has been associated with them their entire life. This is the case with 12-year-old Natalie Mohorter, an extremely intelligent, beautiful young sixth grader with Turner’s Syndrome. Natalie is similar to other children, in the sense that she enjoys science classes, graphic design, riding horses, playing basketball, and spending time with friends. However, what makes her unique is that she has a disease that affects 1 in 2000 girls, making her a true miracle baby. This was despite the fact that doctors told her mother during pregnancy that Natalie would have a 0% shot at life, which has been Natalie’s motivation ever since to live her life to the fullest, proving to herself and others that she is stronger than any label associated with her.

The dangerous thing about labels are the fears and misunderstandings that come along DSC_0003with them. Growing up, for example, Natalie was always teased by children who did not understand or have compassion to see past her Turner’s Syndrome, a condition that encompasses a range of health problems such as infertility, short stature, learning disabilities, and heart defects. In Natalie’s case, she was shorter than most children in her class, making her an often target for bullying. In addition, she was diagnosed with ADHD, resulting in labels that stemmed from her overly talkative-bubbly personality. In Natalie’s case, this provides an explanation for why it is easy for her to make friends, but difficult to keep them. However, there is nothing “horribly different” or “wrong” with having a condition or any other kind of disorder. Whether it is Turner Syndrome or ADHD, these conditions only make a person more unique…different, yes, but aren’t we ALL different in our own respects?

“People should aim to understand one another in the sense that nobody is born perfect, and even if you are lucky enough to be born perfectly healthy, it is unlikely that you don’t have other qualities that make you imperfect.”

This is the message Natalie tried to deliver to people while organizing her sixth grade Gateway Project, a capstone class assignment meant to spread awareness about any topic of her choice. In this project, she officially came out to her fellow classmates, teachers, and community about having Turner Syndrome. She wrote a 5-page research paper about the history of Turner Syndrome, and made a comic strip to describe dealing with her disease, while additionally organizing a poster presentation for her community in her school’s gym. As Natalie describes it, everyone was in absolute awe at how brave she was for coming out about having Turner Syndrome.

Classmates of hers who had teased her in the past were a lot nicer and showed more of an understanding towards her as well. Natalie not only successfully spread awareness about Turner Syndrome to everyone, but made it known that despite any adverse conditions against her, she would not let fear or discouragement from keeping her love and passion for life alive. Natalie is an incredibly gifted and driven young women with nothing holding her back from accomplishing anything she sets out to do.


Inspired by Natalie’s courage? Consider making a DONATION, or setting up a fundraising page. Help steer this important cause for all girls and women affected by Turner Syndrome.

Share your comments below. Like Natalie, you can change the stigma and lack of knowledge there is of Turner Syndrome in your community. Interested? Email: volunteer@tsfusa.org ASK for ways to help or call 732-847-3385

ADHD | SOCIAL CHALLENGES | GROWTH | TAKE ACTION

Pfizer Sponsors Turner Syndrome Autumn Retreat

Thank you, Pfizer, Autumn Retreat Sponsor!

Turner Syndrome Foundation is pleased to announce that Pfizer is a sponsor of 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 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

PAID OPINION STUDY

Paid for your opinion: Recruitment for a usability and human factors research study into a new injecting device is underway. Patients who have growth disorders and those who are involved in treating them, are sought to gain feedback about the design.

The research will consist of either two or three sessions (60 minutes training followed by a 60 minute assessment, or 60 minutes training followed by 2x 60 minute assessments) done on consecutive days and a cash honorarium will be paid upon completion of all sessions as a thank you for your time. This is not a clinical study and no one will be asked to take any sort of medication.

If you are interested, please complete the form below.

https://form.jotform.com/81713919284161

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

 

Running: The Perfectly Painful Outlet

Everyone has an outlet. A passion, an activity, a guilty pleasure. Something that puts their mental and physical health in check. Well….mine is running. Running is more than an activity designed to keep you in excellent physical shape. It is a sport fueled by the passion of someone who wants to challenge his or herself in every mental and physical possibility imaginable. Whether it is by running a 5k, a full marathon, or longer distance, running brings out some of the best qualities in us. I often use my long training runs not thinking about how busy or stressed I am at the moment, but rather how in tune I am with my body and mind. Am I doing what I love in life? Am I happy? What goals am I working on to improve upon myself…to become the best runner, but more importantly, best version of myself possible. Running is the perfect outlet that allows for my creativity to flourish, whether it is on a night run around my neighborhood, or on the trails early in the morning.

Personally, I am a big proponent of listening to music while running. The combination of my rapidly beating heart to the sweet sound of music creates this indescribable chemistry in my brain, giving me unmeasurable doses of adrenaline and passion. Some of my best ideas have come to me on runs, resulting from the process I just described. Heck, my idea to run my first marathon came to me on a run! Running truly makes for the perfect outlet because of the individuality central to the sport. You are competing against yourself the entire time. This is central to understanding how running sets up a chain reaction of events that change and challenge you to overcome your biggest, darkest fears. To morph you into the strong and fierce warrior constantly envisioned in your mind. Every day you run, you are challenged to chase the personal image you’ve been dreaming about obtaining for ages. Do you want to get into better shape, and run your first 5k? Every time you go out for a run, you are positively challenging yourself to do just that. Training to overcome an injury and complete your first marathon? You just challenged yourself to overcome the fear of re-injury, in pursuit of accomplishing something that sets your heart on fire. Running is not only an outlet that calms the mind and challenges the body, but one that additionally challenges you to improve upon overlooked personal traits such as having patience and discipline. It is truly one of the most blissful, yet beautifully painful ways to discover how badly you want to reach a goal, whatever it may be. There is beauty in pain, especially with a goal continuously motivating you the entire way. Whatever your goal is, remember that if you can dream up a way to implement it, you can absolutely 10000% do it….and running can help you can get there.


WHAT IS YOUR OUTLET? Is it running? If so, Be a Part of Team TSF, our heel-to-pavement movement. Join any of the hundreds of races going on all over the country (and world). Not only will you get to do what you love, but you will also be making a difference in the Turner Syndrome Community. Run for Turner Syndrome!  Contact volunteer@tsfusa.org if you have any question.

Inspired? LEAVE YOUR COMMENTS BELOW!

If running is not your thing, you can still do something you are passionate about  while supporting Turner Syndrome. TAKE ACTION.

HOST AN AWARENESS EVENT.

SHARE YOUR STORY

CREATE A FUNDRAISING PAGE

ORGANIZE A BAKE SALE

WALK/RUN FOR TS.. JOIN TEAM TSF

©2017 Turner Syndrome Foundation

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