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!