Laura Fasciano, Dawn Petr, and Lori Kobular, are friends, mothers, volunteers, and TSF Board Members. But they weren’t always united over the common goal of making a difference for all women and girls affected by TS. Turner Syndrome, a condition often seen as rare and random, influenced on each of their lives in a major way. Their story demonstrates how closely linked the TS community really is and the impact we can all make when we choose to come together to support this cause.
I knew Lori before I met Laura. We were both Creative Memories consultants, an online scrapbooking store, and I loved to go to her house to play with all of her scrapbooking tools when meetings were held there. I was aware that her daughter dealt with some medical issues, but I did not know what. She was always very happy and friendly when I saw her, and seemed to love people.
I met Laura some time later through a social club in town, where she organized many events and meet-ups. When she became less involved, I learned that her daughter had been diagnosed with a medical condition, which I later found out was Turner Syndrome, and they could not find proper information and care.
Shortly after, I heard Laura was starting a nonprofit organization, the Turner Syndrome Foundation, to tackle these issues so that her daughter and other girls could find the care and information they needed. Some time later, I went to Laura’s home (at the time it was also the TSF office!) and she told me ALL the things she was doing. It was an overwhelming amount of information to take in and I was impressed. I knew Laura would need a dedicated team to fulfill TSF’s life changing mission, so I said, “You need help.” I signed on for a massive unpaid part time job over the next several years. She brought me up to speed on nonprofits, Turner Syndrome, and the Foundation’s needs and activities. I put a lot of technology into place to facilitate TSF’s work.
Meanwhile, I kept in touch with Lori via Facebook. At some point I shared information about TSF. Low and behold, I found out about Lori’s daughter’s medical condition – Turner Syndrome. I was shocked that this “rare” condition affected the daughters of two friends met at different times and different places. I immediately recognized the need for greater research to investigate if TS is as random or rare as it is thought to be, and was glad to have become involved in TSF. In no time, Lori joined TSF as a volunteer and put together a successful scrapbooking fundraiser.
My daughter, Julie, was born in 1987 and diagnosed with Turner Syndrome at six weeks old. Throughout her childhood, and still to some degree, I struggled to find the answers I needed to help Julie live a healthy, happy life. Around 2000, Dawn and I became friends when we were on the same Creative Memories Team, but I did not share Julie’s diagnosis. Years later, I saw a Facebook post by Dawn about working at the Turner Syndrome Foundation. I was going to a fundraising event and Dawn’s post inspired me to fundraise for TSF. I contacted Dawn with my idea, never expecting to be in charge of running an event. After speaking with Laura, I realized how important donations are because they directly contribute to the longevity and growth of the organization. If I wanted to see real change for my daughter’s sake, I needed to play a role in what TSF was capable of. I decided to host a fundraising scrapbook event to benefit TSF.
After running the event, I wanted to do more. I hosted an Awareness Blog Hop with my design friends during the first week of February, Turner Syndrome Awareness Month. I had over 40-design team members participate by making a card with the theme “TSF Together.” With designers from all over the world, the Blog Hop became an incredible opportunity to raise awareness of Turner Syndrome and donations for TSF. The Blog Hop is now an annual awareness fundraiser. You can find information about the 2020 Blog Hop at https://myturnersyndromejourney.blogspot.com/2019/02/its-girl-thing-turner-syndrome.html
“I realized how important donations are because they directly contribute to the longevity and growth of the organization. If I wanted to see real change for my daughter’s sake, I needed to play a role in what TSF was capable of.”
The incidence of TS is 1 in 2,000 but when you see our connection, it makes the number more of a reality than a coincidence. After all, how could one board member befriend two women with daughters who survived Turner Syndrome? As unbelievable as this is, it is even more incredible what otherwise ordinary people can accomplish when they collaborate to solve a problem. I am forever thankful to these women and all who dedicate themself to supporting this mission. The work can be difficult, but the friendships irreplaceable and the future promising. Together, we make a difference!
Our goal for 2020’s February Awareness Month is a big one- we want to raise awareness of Turner Syndrome in every state! We hope that outreach to communities across the country can develop so that women and girls in every corner can see that there is support available to them!
There are several actions you can take to help us with this goal, but let’s jump straight to the most important one for now:
That’s right, our goal for 2020 is to see an event happening in every state throughout the month of February. Any event, big or small, that has a focus on TS awareness will take us one step closer to our goal! Join us this February by hosting an event in your state, or teaming up with others in the community to co-plan an event. A great way to meet others to collaborate with is via our state Facebook pages.
…and, the list goes on! The options are endless, and many take very little organizing. Don’t let your state be left out in this year’s Awareness Month! Help us start 2020 strong by raising awareness in every state!
Keep reading to find out how we can support you, and learn about an extra perk of organizing an Awareness Event.
We are so glad you asked! Once you decide to plan an event, let us know on our website so we can work with you on planning and add it to our calendar and map to inform others to save the date. We will send you all the materials you need for outreach like posters, social media images, information pamphlets, and more, so you are equipped to raise that awareness! Be sure to follow along on Facebook to see our progress.
If your state already has an awareness event planned for February, please don’t let that stop you- the more the merrier! Or, consider teaming up with the event organizer to develop your state’s event even further.
The more events and the more awareness we can raise, the better!
As if raising awareness of TS and connecting with the community aren’t enough incentive, the first event organizer who registers will automatically receive some TSF merchandise to rock at their event. Plus, one other lucky event organizer will also win some merch! By registering as the event organizer you will be entered into a random prize drawing. The winner will be drawn at the end of January, and the items will be shipped to you, on us.
This is an Alert
I am a description. Click the edit button to change this text.
Have you ever wanted to learn more about your diagnosis of Turner Syndrome? Then this is the perfect book for you! Our new Turner Syndrome Patient Handbook includes all the resources you need to understand TS and the health factors associated with it. Our handbook will empower you to organize your health records along with gaining knowledge of Turner Syndrome!
This handbook is the perfect gift for this holiday season! You can keep track of your health records and learn more about TS in the upcoming year. This handbook will help you look back on your TS journey and understand your health. This will be a great gift for anyone diagnosed with TS and their caregivers. More importantly, every doctor has a shared resource to learn about the patient’s health.
If you or a loved one has Turner Syndrome or is unaware of what TS is then this is the perfect book for you. Below is a link to our new Turner Syndrome Patient Handbook, a great gift this holiday season!
November is the month of being thankful, and with that we would like to thank the health care providers who go above and beyond each day for girls and women affected by Turner Syndrome. 1 in 2000 girls are affected by Turner Syndrome each year. This genetic condition has affected the lives of so many females at every stage of life; some diagnosed and some undiagnosed. Each day TS girls wake up, they are grateful to have the support and help of those who provide health care for them.
We would like to dedicate this month to all those who work in health care. No matter if they are a surgeon, pediatrician, occupational therapist, physical therapist, dentist, doctor etc. Each of these providers empower TS women and girls to live a healthy life in order to accomplish their goals. So this November, we thank all those who provide health care for our children and families.
If your life has been changed for the better because of a health care provider, please tell us about them at this link. This will allow us to thank them, and share their information as a resource for other TS girls and women. Thank you for joining us in being thankful!
If you didn’t already know, TSF has a page for all 50 states! These pages exist so that people in every state can connect and follow local updates. If you are looking to meet other people with TS or find resources this is a great place to start. On the Facebook page you can also find out about ways to support our mission!
All of the pages are public so that anyone can be involved in the conversation. Each page has a moderator who will post updates from TSF and serve as the point of contact for that state. Additionally, if you have any questions about TS, send the page the message and the moderator will send you a response.
Another great part of the state pages is the opportunity to share your story. We love to hear what is happening with TS women and girls! Feel free to share updates through the page’s messages. This could be celebrations, good news, or requests for support, for example. The moderator may ask to share your update on the page so others can celebrate with you and support you.
Follow the main TSF Facebook page first to ensure you keep up with our news and updates. You can find the Facebook page for your state by typing in the search bar “TSF (your state)”, such as “TSF New Jersey.” Be sure to send a message saying hello to the moderator, she will be happy to hear from you!
New Jersey state employees can support us throughout the year in a simple way. Thanks to the New Jersey Employees Charitable Campaign, charitable giving can become a regular part of life! By setting up payroll deductions, a donation every paycheck can go a very long way in helping us to achieve our goals.
Donations received help to support our mission of helping women and girls with Turner syndrome. For example, we have a focus on facilitating educational programs about TS and investing in research that is needed in order to enhance health care. Every employee who donates, even $5 per paycheck, is standing with TS women and girls.
We appreciate the state of New Jersey for implementing this program that empowers its employees to give back. Because of our donors we are able to make progress towards better outcomes for TS women and girls.
At the end of each year, Turner Syndrome Foundation holds an annual appeal, a fundraising initiative to generate support for the coming year. Thanks to everyone who gave to last year’s annual appeal, TSF was able to:
There are exciting plans for 2020, and with your donation, we can continue our life changing work to support promising research opportunities and raise great awareness for Turner Syndrome together!
If you prefer to give offline, mail your check payable to Turner Syndrome Foundation, to PO Box 726, Holmdel, NJ 07733 or by call for assistance at (732) 847-3385. All gifts are tax-deductible.
Multiply the impact of your gift by becoming a monthly donor! Monthly donations make it possible for our mission to continue all year long. By spreading your donation throughout the year, you can make your gift easily fit your budget. All you have to do is select “Make this donation recurring” when you checkout!
We thank you for your continued support for this mission!
A few weeks ago, I hosted a picnic and walk meet up at Eno River State Park in Durham, North Carolina through the Turner Syndrome Foundation. Choosing a public location meant that I didn’t need to make any expensive reservations ahead of time. So, with just a little bit of effort and planning we enjoyed a wonderful Saturday afternoon together!
With the meet up idea in mind, I filled out the Foundation’s Event Form, which can be found here. Just a couple of days later I heard back that my event was approved! They promptly posted information on their Facebook page and in their monthly newsletter. I also shared the event on my own page and made sure to invite anyone I knew who might be interested!
Then, I just had to wait for the day to arrive! I asked attendees to bring their own bagged lunch to complement the picnic sides and waters I would bring, which only cost a few dollars.
We had seven people attend the meet up, including a few partners and spouses (and even a dog!). Conversation ranged from upcoming trips we had planned, hobbies, the beginning of the school year, and our favorite shows and books. We also discussed some of the Foundation’s recent initiatives like the Patient Registry and shared some common experiences with Turner Syndrome.
Once we finished eating, we went for a short walk around the park. Making new connections and learning new things about the people we already knew was a highlight of the day. The atmosphere was lighthearted and fun, and we left feeling full on food and great company. I certainly can’t wait until I host a meet up again!
Do you have a desire to meet other Turner Syndrome families near you? You can plan a meetup in your area just like volunteer Audrey did. Additionally, find out how you can turn your meetup into a fundraiser to have a greater impact!
by Katie Steedly Curling, PhD, Writer & Guest Blogger for TSF
A writing teacher explained to me after he read my essay, “The Unspeakable Gift,” that the essay was the moment I came out as a woman living with Turner syndrome. It focused on my experience participating in a Turner syndrome study at the National Institutes of Health. He was right. I had been silent about Turner syndrome with everyone but my immediate family and doctors prior to that publication. At 15, my diagnosis was shrouded in fear and denial. I did not want to find out any more about the condition. I wanted to be normal and living with Turner syndrome did not feel normal. At 37, I went public with very intimate details of my health story.
Coming out does not have to be an essay in a magazine. I jumped into the deep end of the disclosure pool. Each person touched by Turner syndrome, or any health issue for that matter, has to come out (or not) in their own way. It is a deeply personal and individual choice. It opens us to questions that may or may not be comfortable or answerable. It means we have to make peace with our bodies enough to find words. It connects us with the community of people who live with chronic conditions. It forces us to break barriers of isolation and shame. Coming out is a tough thing to choose when silence can be a warm safe space to hide.
I have learned a few things about coming out over the years. I have learned that people know very little about genetic disorders. Once I disclose that I have Turner syndrome, I am immediately thrust into information-giving mode about sensitive subjects like infertility and cognitive and social functioning: not necessarily the easiest things to talk about. I have learned that most of my conversations about Turner syndrome are compassionate and caring. They ease my fears of being judged and rejected. In fact, these conversations build trust. The more I talk with others, the easier it gets and the less strange and broken I feel. Ultimately, it is about the value of vulnerability. Courage is found in coming out.
In retrospect, coming out was one of the hardest and most important things I have ever done. After many years of silence, a weight was lifted from my shoulders. It did as much for my confidence and sense of self-worth as the achievement of life goals because the risk of being seen is as great as the risk of failure. It invited others to get know me, and me to get to know others, in meaningful ways. (I am still working on getting better about inviting others into my story and listening to the stories of others. I suppose that is a lifetime challenge for us all.) Most importantly, it allowed me to begin to see Turner syndrome as a gift that has allowed me to realize my strength, to share hope with others, and to understand difference more deeply than I could ever imagine without Turner syndrome.
Katie’s honesty shows how being open about your diagnosis can lead to a community of support. At TSF, we strive to build a community of shared experience and hope, like in the Star Sisters group.
For parents looking for ways to share a diagnosis with their child, we’ve created the Tina Talks Turner’s children’s book and video. Tina discusses her own TS journey to help young girls make sense of their diagnosis. Start the conversation today for improved health outcomes tomorrow.
Boscov’s Friends Helping Friends event is the biggest shopping day of the year! Shop your local Boscov’s on October 16, 2019 with your shopping pass and support TSF! For a $5 donation, you’ll receive a 25% off pass that can be used multiple times throughout the day! Passes may be used at ANY Boscov’s location, in-store only.
Get your holiday shopping done early this year, save big, and do good! 100% of proceeds from passes sold will directly benefit TSF! Plus, participating nonprofits will be entered in a drawing to win an additional $100 donation! In October 2018, Friends Helping Friends day raised over $600,000 for local nonprofit organizations. Donors will also have the opportunity to win fabulous prizes from Boscov’s, while enjoying refreshments and entertainment throughout the store. Will you be a part of this incredible day?
Event Details – Boscov’s Friends Helping Friends Day
Date: October 16, 2019 all day long!
Locations: All Boscov’s locations. Coupons not redeemable online.
Click here for a list of Boscov’s locations. Boscov’s is located in CT, DE, MD, NJ, NY, OH, PA, and RI.
For coupon details and exclusions, please visit Boscovs.com.
Purchase your pass today from our online store. Buy a few and share with friends and family! Orders must be completed by October 13, 2019. Passes can be picked up from the TSF office or mailed to the address provided at checkout.