In this post, Lori, a mother of a woman with Turner Syndrome (TS), details two awareness and fundraising events she organized and how she has pivoted to virtual activities since then.
People ask me why I fundraise for the Turner Syndrome Foundation (TSF). I do it not only to help my daughter Julie, but to help other people with TS and their parents/caregivers. I do it to help fund research about the long-term effects of TS on individuals with this condition.
Why is this so important to me? My daughter, Julie, was diagnosed at six weeks old, and the doctors in our area had no other patients with TS and were not familiar with the condition. We had to take her to Children’s Hospital two hours away from where we lived to see her specialists, who were familiar with TS. Julie is now 33 years old, and many people still have not heard of TS. I have made it my mission to bring more awareness of TS to the public, in the hope that more research will be done.
I am a scrapbooker and greeting card maker, and in 2018 I decided to host a scrapbooking fundraising event for TSF. I invited all of my scrapbooking friends, and they invited their friends. I held the event at the Ocean Acres Community Center in Manahawkin, NJ. I am on several stamp and die company design teams, so I contacted several online scrapbooking stores for donations of door prizes. I talked to local businesses to get meals donated for the event. The participants had a great time and were very pleased with the prizes that they won, and we made a nice donation to TSF. We also set up a photo booth area for the event; here are the results:
My scrapbooking buddy moved to Florida, so in 2019 I decided to do a blog hop called “It’s A Girl Thing: Turner Syndrome Awareness Blog Hop.” On the main blog, I gave information about TS. I made some greeting cards and had my card designer friends make some, too. Participants would go from one blog to the next to see the cards we made, and there were chances to win prizes.
I sell my cards on a Facebook page called “Cards for Charity” for $3 each, and I donate all of the money to TSF. The “It’s A Girl Thing” Turner Syndrome Awareness Blog Hop has become an annual event in the month of February, which is TS Awareness Month. This year, I am changing it up; there will only be 12 blog stops, and anyone who wants to make a card will have a chance to win a prize from the 22 caring and generous sponsors. I will again be selling my cards for $3 each, to benefit TSF.
One of the sponsors, Jan Mahew, has designed a TSF digital stamp set (see below) that you can purchase from her online store to make your own cards. Jan is also donating all the funds from the sale to TSF.
Written by Lori Kobular, mother to Julie, a woman with Turner Syndrome (TS). Edited by Susan Herman, TSF volunteer blog post editor and translator.
You can create an online fundraiser easily on TSF’s website! All donations will directly support our mission, and your donors will receive tax receipts for their donations.
To donate to TSF, click here.