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A Cordial Invitation: Patient Education Workshop at Montefiore

The Turner Syndrome FOUNDATION cordially invites you to our 5th Annual Patient Education Workshop at the Children Hospital at Montefiore on November 17th.  This is a FREE event opened to anyone who’s interested in learning more about Turner Syndrome. This year’s panel will consist of a variety of professionals from different background and specialties. Topics will range from “Improving Early Diagnosis of Turner Syndrome” to “Fertility issues” and “Dermatologic Conditions in Turner Syndrome.”

LEARN MORE

Why should you attend?

Not only will you be informed of many of the implications present in TS, but you’ll also gain knowledge of the appropriate solutions. You’ll have an opportunity to express your concerns and ask qualified individuals any question you may have concerning your own health. Additionally, attending this event will connect you to other patients and family members who have also been affected by Turner Syndrome.

Advanced registration is required for this event. Sign-Up today!


Can’t make it to this workshop? Help plan one near you.

We encourage professionals and citizens to collaborate with the Turner Syndrome Foundation to organize a patient workshop near you closer to home for the many people in your area who are affected by Turner Syndrome. As you will see on the MAP the population count is rather large in every state. With your citizenry and leadership, we can work together to forge new relationships to foster a center of care and education closer to home.

Please complete the form HERE and a Turner Syndrome FOUNDATION staff will contact you for assistance.

Thank you.

Think of Turner Syndrome on Thanksgiving

With the Thanksgiving holiday upon us, we know that there is so much to be thankful for. Yet, the world we live in comes along with troubles, and some of those conversations are not best suited for the table. Everyone knows what topics to avoid, from politics to religion, as they tend to make dinner conversation just plain awkward. Instead, let’s make the center of our conversations not only what we are thankful for, but also what we can do to give back and make positive change.

In 2015, a survey showed that the top things Americans are thankful for are their family and their family’s health, technology, and their personal financial situation. While these are wonderful things to give thanks for every day, not everyone has the same blessings in their life. Turner Syndrome women and girls face challenges that we should all be considerate of and while technology can be used for advancing medical research, there is still so much that is unknown about the medical conditions associated with TS. Financially, anyone with a rare and complex medical disorder struggles through a mountain of bills that restrict access to care.

In your Thanksgiving conversations, take time to talk about the challenges others face in life and how you can make a difference. We all have the ability to make a difference in the lives of those around us, so with your closest family and friends, think of a way you can make a collective impact.

Perhaps in looking forward to the holidays, you can each pledge to donate a portion of your gift spending to Turner Syndrome Foundation or another organization you support. Maybe you could host a community holiday party inviting your office, church, or whatever other group you belong to, to include people who might not have friends and family to celebrate with. Whatever it is, we believe that the holidays are a time to give back, and Thanksgiving is a great opportunity to bring your loved ones together to talk about what you can do to have fun together and make a difference.

Plan a special event sign up here

Looking to support TSF with a donation? Make a secure donation online or by mail

Happy Thanksgiving!

An Easy Way to Take Action!

Do you want to experience how amazing it feels to give back this holiday season? Do you want to show your loved ones how important this cause is to you? Turner Syndrome Foundation has a simple solution to help you make that happen!

We know this is a busy time of year, with lots of planning, shopping, and traveling, but with just a few hours of your time and one trip to the post office, you can make a huge difference for those affected by Turner Syndrome!

We’ve already written an appeal letter for you – all you have to do is fill in your information, print, and mail! Emailing your letter to your friends, family, coworkers and more is a great option, too!

CLICK HERE to get your letter today!

Be sure to visit https://turnersyndromefoundation.org/2017/11/01/support-mission/ to learn more about TSF’s annual appeal and https://turnersyndromefoundation.org/tsf-annual-report/ for an excellent resource to help educate your network on Turner Syndrome and TSF’s mission.

Support TSF While Shopping on Cyber Monday

Are you planning to search for great deals online on Cyber Monday? When you shop through one of our supporting partners, you’ll give back to TSF! How awesome is that?!
Here’s how it works:
  1. You buy your favorite items and holiday gifts online this Cyber Monday
  2. The company will donate a portion of the price to TSF at no cost to you
It’s that simple! Same products, same prices, same service, but a huge impact for TSF!
 
Click the links below to visit our partners and get started:
  • Amazon – great deals on popular holiday products!
  • Good Shop – deals and coupons all year round!
  • eBay – sell for charity!
  • Bravelets – 10% of purchases benefit TSF!
We’ll see you online this Cyber Monday, November 27!
 Thank you for your support.

Giving Tuesday is November 28

November 28 is a national day of generosity, Giving Tuesday! Giving Tuesday is held each year after Thanksgiving (in the US) and the widely recognized shopping events Black Friday and Cyber Monday to kick off the holiday giving season and inspire people to collaborate in improving their local communities and to give back in impactful ways to the charities and causes they support. In 2016, over $177 million was raised online to benefit a range of organizations, and much more was given in volunteer hours, and acts of kindness! How amazing!

There are so many easy ways you can join the action and support TSF this Giving Tuesday! Here are some ideas:

  • Make a gift on #GivingTuesday to show your support.
  • Show your skills as a TSF volunteer! Complete the volunteer application and we’ll match you with an opportunity that matches your skills.
  • Set up a personal fundraising page and invite your supporters, family, friends, coworkers, and more to participate in Giving Tuesday with a donation to TSF. It’s quick and easy to set up a fundraising page – a small effort, but a great impact!

To learn more ways you can support TSF, click here. Don’t forget to mark November 28 on your calendar, it’s just two weeks away!

TSF is Investors Bank’s Business of the Month

investors_bank_care2share

Did yocare-2-share-program-coveru know that Investors Bank has selected Turner Syndrome Foundation as their Business of the Month? For the month of November, Investors Bank is featuring TSF on the TV monitors in every branch!

You can show them our appreciation by stopping into your local branch. Introduce yourself and educate Investors about Turner Syndrome. Let them know how important their support is to our mission and raising awareness! Take a photo by their monitor and share on social media to say thank you! Make sure you tag @TurnerSyndromeFoundation and Investors Bank so we see your post!

TSF is also a proud partner of Investors Bank’s Care2Share program! Investors will make a quarterly contribution to TSF on your behalf at no cost to you – just for banking with them! Already have an account with Investors? Be sure to let them know you support TSF! Don’t have an Investors account yet? It’s easy to join, just ask when you stop by your local bank to see TSF on their monitors! To learn more about the Care2Share program, visit https://turnersyndromefoundation.org/become-supporter/investors-bank-care2share/.

 

Raise Money for TSF with Amazon!

Looking for a way to support the Turner Syndrome Foundation in your daily life? We are proud to partner with Amazon to make that possible! AmazonSmile is an amazing initiative that donates 0.5% of your purchase on the website to TSF. There are no extra costs, and the products are all the same, but your purchase will benefit a nonprofit organization that you believe in and want to support. These days, many people use Amazon regularly for their purchases, and the small amounts of money donated will add up, providing extra funds to TSF to provide free services to the people who need them the most.

Signing up is quick and easy! Simply go to smile.amazon.com, sign in with your Amazon account, and choose Turner Syndrome Foundation Inc. as the organization you would like to donate to. Then whenever you want to buy something on Amazon, go to the same URL of smile.amazon.com and you will already be signed in to donate to TSF. Just make sure that when you are on the website the logo in the top left corner says “AmazonSmile,” and that’s how you know you are logged in to donate. Again, this is such an easy way to support TSF with purchases you would already be making.

According to The College Board, the average student spends $1,168 annually on books and materials, which would equate to a donation of almost $6.00. Forbes reported that the average parent spends $1,700 on Christmas shopping per year. If the gifts were purchased through AmazonSmile, TSF would recieve a donation of $8.50 for shopping you are already planning to do. In fact, the average Amazon Prime subscriber spends $1,300 per year on the website, according to Fox Business, equalling a potential donation of $6.50. While a few dollars here and there may not seem like much, when you add up the donations that would be accrued even if 100 Amazon Prime users made their purchases through AmazonSmile regularly, we would recieve an extra $650 annually! This money would empower us to offer more patient workshops and other services, support research, and more!

Please take a moment to visit amazon.smile.com to sign up, and we are so grateful to all those who make supporting the Turner Syndrome Foundation a part of their daily shopping. If you want to do more to support the initiative, visit https://turnersyndromefoundation.org/become-supporter/give-now/ to make a donation to the organization. All funds recieved are used to champion the mission and provide services to patients with a rare genetic disorder. Thank you in advance for your help! Sign up here

amazon smile makes a difference

The importance of writing to your legislators

Rally for Medical Research

We have been running our campaign to gain signatures on a letter to legislators for a few weeks now and have recieved great feedback! We’d like to further stress how simple it is to sign on to this legislative advocacy, yet how much of an impact your support can have.

Our letter will be sent to national legislators across the country, asking them to add Turner Syndrome to their list of priorities in the upcoming year, with a goal of receiving legitimate interest in passing a bill. In this bill we’d like February to be established as Turner Syndrome Awareness Month on a national scale, which is a step towards raising awareness. We would also like legislation to establish specialized centers of care in every state so Turner Syndrome patients are able to recieve the medical attention they need. Further, we are advocating for funding devoted to research, and the creation of a national board on Turner Syndrome to coordinate efforts.

By signing on to the letter, you are raising your voice as a supporter of these main goals. We are advocating not only for Turner Syndrome patients, but also their families and caregivers, and people who will be affected in the future. This all goes into a larger national agenda to raise attention to women’s health needs, which is a prevalent conversation in society.

Signing the letter will take only a minute, but will have a profound impact on the campaign. We ask for your address so we can filter signatures to the appropriate legislators, but they will all add up to a larger call to action. You may access the online form here:

Making February “Turner Syndrome Awareness” Month

We would greatly appreciate your support on this campaign, and ask that you would consider making a donation to the Turner Syndrome Foundation in this season of giving. The funds we recieve allow us to work towards the goals we have established for the national legislative campaign, including providing patient support and education, and funding research initiatives. Again, we thank you for the support we have been continually grateful to recieve.

BECOME A SUPPORTER       BUSINESS SUPPORTS TSF

“Why me” to “What for?” A remarkable story.

I never thought I would have the opportunity to write about my personal Turner Syndrome story as a physician-immunologist, researcher and mother. It was an ordinary day, like any other day. I opened my email and received my daughter’s karyotype test. Her pediatrician and endocrinologist had decided to ask for this specific exam because she was worried about growth stopping in a 12-year-old girl. I just took my daughter to the pediatrician for the annual checkup and because we wanted to know if everything was okay with her sexual development. My Isabella was a healthy baby, until that moment. She was psycho-emotionally intelligent and lover of the corporal expression through ballet.

Naty & IsabelleI stared at the email sent by a very prestigious private clinic in my city for a few seconds and finally opened the attached file. The diagnosis was an “abnormal mosaic female karyotype” and then it said “monosomy of the X chromosome and isochromosome.”  At that instant I stopped breathing… took a new breath,  and started my duel. It was as if I could not think clearly. So sitting in my office at work I started to cry, called my secretary and said to her: “Now I know why my daughter has not grown up like the other classmates, my daughter has a genetic problem…” My crying intensified and my soul broke into pieces. Feelings of guilt crowded my heart and I started blaming myself for not realizing it before there was a problem.

Then, after calming down a bit, I contacted my sister via email, who is a geneticist, working in Toronto (Canada). She immediately made many suggestions about what to do. After reading her extensive and detailed communication, full of scientific terms and genetic jargon, I could only remember these words: “You and your daughter should go seek genetic counseling.” And I said to myself: “That’s what I will do!” And that’s because I really did not know how to tell my daughter that she has a genetic disease and only then, 12 years later, she was diagnosed.

I asked my secretary to call the Genetics Unit at the University, the most important in my country and where I have had the honor to work for almost 20 years. The news about my daughter’s health ran fast through Canada and my mother called me on my cell phone. My mother, also a physician and pediatrician, graduated from UCLA in Los Angeles, California and was the first endocrinologist in my country to initiate, almost 40 years ago, growth hormone in girls with Turner syndrome in her hometown of Maracaibo -Zulia state. Her experience was unique and very gratifying with her most consenting patients.  My mother with her maternal and pediatric nature assured me by saying: “Do not worry, everything will be fine for your daughter. It is now important to start doing all the tests and check-ups on the organs.” Just like my sister, she recommended me to seek out a pediatric endocrinologist to initiate all the tests and begin growth hormone treatment, and later the substitute treatment of female sex hormones. I was a carousel of emotions. Feeling of denial, deep sadness, rage and even fear visited me.

I thought a lot as I was looking for help with the specialists. One day, the political and economic situation in my country got so bad that I could not continue the hormonal treatment, and with great courage I made a big decision, for the future and the health of my daughter to move permanently to another country, in order to guarantee her quality of life. I began doing all the legal procedures to get our new life. This took almost two years of physical, mental and spiritual struggle. Finally, we achieved it! and I say “we” because it became our goal of life, a mother and daughter team. Today, my daughter attends a school of good academic standing, is a brilliant student and is doing the elective subjects that she is passionate about, dance and theater. In addition, she resumed her ballet classes in one of the best ballet academies in our new city and will participate in the youth choir of our church. Aside from her relative low height, and that could be attributed to not being the smallest in her classroom, she has no stigma of the disorder.

But what did we learn from all this? That one must be a person of faith. A faith, that allows us to change the question, Why me? to What for? And respond, to be better … and thankful to our Higher Power for the challenge that he placed in our lives. I also learned other things, such as being a grateful person, to return to others what God so generously gives me day by day. And finally, to forgive- myself since I am not guilty of the situations that life presents. Nonetheless, for the diagnosis of my daughter. Yes! I am responsible for ensuring her well-being, not only physical, but also her psycho-emotional, intellectual and spiritual stability.  To give her much L O V E, with each of its letters. I learned that every day I love my beautiful Isabella much more.


Compelled by her story? Leave your comments below.

Consider making a DONATION and help us steer our mission of increasing awareness and reducing the age of diagnosis of Turner Syndrome.

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An Easy Way to Take Action!

Do you want to experience how amazing it feels to give back this holiday season? Do you want to show your loved ones how important this cause is to you? Turner Syndrome Foundation has a simple solution to help you make that happen!

We know this is a busy time of year, with lots of planning, shopping, and traveling, but with just a few hours of your time and one trip to the post office, you can make a huge difference for those affected by Turner Syndrome!

We’ve already written an appeal letter for you – all you have to do is fill in your information, print, and mail! Emailing your letter to your friends, family, coworkers and more is a great option, too!

CLICK HERE to get your letter today!

Be sure to visit https://turnersyndromefoundation.org/2017/11/01/support-mission/ to learn more about TSF’s annual appeal and https://turnersyndromefoundation.org/tsf-annual-report/ for an excellent resource to help educate your network on Turner Syndrome and TSF’s mission.

Men’s Role in Women’s Health

Me and My Guy

Girls are often talked to about female role models as an example of aspirations they can have. These are often women who have great achievements, who broke the glass ceiling, and who teach girls that they can do anything they set their mind to. They may also be women close to us who show exceptional character, and who have raised us with care and support. Yet, we do not often talk about the importance of male role models, which can be just influential in promoting the success of the rising generation of girls. As Katy Pollard, writer for The Guardian states, “I think we also need to make sure men understand the way they behave towards the women in their lives can mould them,” sharing that her father’s expectations and guidance gave her confidence to succeed.

An article shared three ways men can support women, including learning to listen, paying attention to injustice, and taking a stand. These goals go hand-in-hand with our “My Guy & Me” campaign highlighting the role of male caregivers in addressing Turner Syndrome, that many submissions have already articulated. One step is for men to pay attention to this issue, despite it being a women’s health concern. By listening and caring, men can show women that their concerns are also a priority. Additionally, men can come to understand the challenges women face from their perspective so they can be addressed more effectively in the future.

Paying attention to injustice also relates to Turner Syndrome, as injustice happens every day when a child is lost to the disorder, or when a woman cannot access the health care she needs. Men can notice these concerns and take a stand by helping to find resources to optimize patient care, and sharing this women’s health concern with others so research can advance. We have seen through the “My Guy & Me” campaign that Turner Syndrome girls have been supported by men in their lives, often fathers, husbands, uncle, brothers, sons, and friends. We are so grateful to each of these men who have shown their dedication to women through challenging times and who serve as a pillar of strength. Please continue to submit photos of your guy and you with a message about the role he has played in your life. This campaign will show that while Turner Syndrome is a women’s health issue, it affects men in profound ways as well.

Submission Form Below                                                                                        Check out submissions

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