Scrapbook for Turner Syndrome!
Do you enjoy capturing lasting memories with your family and friends in scrapbooks? Is crafting a hobby you enjoy? Then join Turner Syndrome Foundation and host Lori Kobular at a scrapbooking event! Events include crafting and scrapbooking vendors, and a raffle featuring more than 40 items! Lori organized this event to educate the public about Turner Syndrome, a condition that affects her daughter. Raising her daughter, Lori realized the need for awareness and education of Turner Syndrome. Often they were the only family in the doctor’s office affected by Turner Syndrome. Even with the struggles that come with a rare condition like Turner Syndrome, Lori says her daughter is the friendliest person she knows and wants to be just like her when she grows up! Join Lori in supporting change – spend the day crafting with friends while benefitting a local charity! Registration for the event is $45, and includes breakfast, lunch and dinner.
Host: Lori Kobular
Date & Time: March 31, 2018 @ 9am-9pm
Location: Ocean Acres Community Center in Manahawkin, NJ
Turner Syndrome Awareness Month is already half over! There has been great energy so far and we are so thankful for everyone who chose to take action this February! Awareness Month isn’t over yet – there’s still plenty of time to get involved!
For week three of Awareness Month, we want you to keep the conversation going. Awareness is defined as “the knowledge that something exists, or understanding of a subject.” Think for a second. Do your neighbors know Turner Syndrome exists? Do your coworkers fully understand what Turner Syndrome is or how it affects your life? The easiest way to raise awareness this February is to make people aware of Turner Syndrome!
A simple way to get them talking about Turner Syndrome is by sharing something on your social media pages. We have lots of options for you to choose from!
Raise even greater awareness by sharing all four of the options above! Be sure to ask your friends and family to re-share to reach their followers, too. The more people that learn about Turner Syndrome this month (and always!) the better!
Turner Syndrome Foundation has been invited to partake in the Inaugural Rare Disease Day at St. Joseph’s University Hospital, Paterson, NJ. on February 28th.
Should you have any question, please contact Monica Bobadilla at email@example.com | 732-847-3385
Turner Syndrome Foundation is proud to announce the Turner Syndrome Research eXchange (TSRX) in collaboration with Invitae’s Patient Insights Network (PIN). TSRX is a space for permission-based sharing of your medical data to advance research and inform Turner Syndrome treatments and care.
TSRX is different from typical patient registries because you are in control of all of your data and choose how you’d like to share. Your data is also de-identified, meaning it doesn’t contain your name, date of birth, or other identifying data to maintain your privacy. The best part of all? Once you join, you’ll be able to explore others’ de-identified data to see how they’re managing their Turner Syndrome journey to help you understand your own health.
Join the Turner Syndrome Research eXchange, and you’ll be helping researchers gain a deeper understanding of Turner Syndrome. For a complex condition like Turner Syndrome, the patient’s voice is a crucial part of research. All patients and caregivers are encouraged to join!
The time is now to stand together for the future of Turner Syndrome care.
Our petition to send to legislators has seen great success in gaining signatures, but the momentum needs to continue in order to have the largest impact. With 568 signatures across the country we can gain attention, but we know that we can do better! There are several things you can do that take minimal time and effort in order to further the support of this intiative.
This flyer can be shared on social media in order to gain more signatures on the petition, and it can be printed and posted all over your community! The more people who sign, the better!
Additonally, communicating directly with your members of Congress is so important to show that people are serious about having legislation passed to support Turner Syndrome patients. Start by writing letters, especially handwritten ones, and calling their office. Then try to set up a meeting with your legislator to discuss the needs of women and girls affected by the disorder. You can also go to a town hall meeting, which is a great time to get the attention of your Congresspeople.
We have put together a packet of information for those interested in continuing advocacy work, which provides in-depth details on each of these steps, and also provides a sample letter and script for you to use. Many of these steps takes no time at all, but can have a major impact in gaining legislative support! Please email firstname.lastname@example.org to request a packet.
JOIN THE MOMENTUM… SIGN THE PETITION!
“There is only one happiness in life: to love and be loved” Today we are celebrating the best gift of all! An official day to express LOVE to those that somehow have made your existence better. Whether be your friend, parents, children, partner, siblings, spouse.. It doesn’t matter! Nurturing those loving relationship is of extreme importance; this day is the perfect opportunity to let them know how much you LOVE, care and appreciate them.
Imagine opening your email and receiving an unexpected loving note? Isn’t it nice to be thought of? Something as simple as that can really turn the worse day into the best one. In honor of Valentine’s day, TODAY we want to offer a great way to express the art of LOVE- We’ll send YOUR VALENTINE a beautiful e-Card with a photo and message of your choice. All you have to do is complete this brief form and make a small donation of ANY amount- and just like that… you’ll be spreading love.
The greatest gift you can give to someone is your unconditional LOVE. Spread IT everywhere you go. Let no one ever come to you without leaving happier.
It’s week two of Awareness Month and we have another great idea of how you can make a difference.
Advocacy is the path to obtaining the support and services you need. As an advocacy organization, we understand that gaps exist in certain areas of Turner Syndrome care, legislation, and more. However, with your help, we can raise awareness to make Turner Syndrome a national priority.
Ask your local officials to declare February as Turner Syndrome Awareness Month. All you have to do is complete a brief form and we’ll send it to the legislators representing your constituency. Sign today and make sure your voice is heard.
Awareness Month is an opportunity for our community to come together, to raise our voices, and make sure everyone affected by Turner Syndrome is receiving the care they deserve. By making more people aware of Turner Syndrome, there is hope to reduce diagnosis age, to educate doctors and teachers, to eliminate any stigma associated with Turner Syndrome, and so much more. Most people do not understand Turner Syndrome until they are personally affected, but together we can start a conversation and change the future of Turner Syndrome care. Your local legislators hold the power in your community to make that happen.
There is an estimated 80,000 women and girls living with Turner Syndrome in the U.S., 2 million worldwide. This number does not include the parents, siblings, caregivers, and more who are also touched by this condition. Ultimately, there are more than 2 million reasons to sign the petition.
One of the greatest joys of work at the Turner Syndrome Foundation is hearing stories of people getting involved across the nation to make a difference. On February 5, a wonderful Turner Syndrome parent and advocate, Dana, and her daughter, Carly Joy, went before the Pennsylvania State Senate on behalf of Turner Syndrome Awareness Month. Dana has successfully advocated for February as awareness month for six years in a row, and her story can inspire us all to work to achieve the same goal in every state, and on a national level.
“What an emotional and amazing day it was. Since the day Carly Joy was born, she has been my hero and inspiration. I truly am the mom and person I am because of my journey through life with her. She has encountered more obstacles in her short life than most adults do in their life time. At times, I question how it’s even fair or possible. Yesterday was a special day. Carly Joy was introduced on the State Senate Capitol Floor, in Harrisburg, as a miracle, survivor & inspiration followed by a standing ovation! Then, Senator John Blake talked about Turner Syndrome, he provided the legislatures with information I have given to him for 6 years now. He tells them about the statistics, possible health issues, and how there isn’t enough funding and research, for not only TS but nonverbal learning disorder (NVLD), and infertility issues. When he was done speaking I thought to myself, WOW, that’s my BABY, (now 10) they’re talking about!
As amazing as that was, the defining moment was to follow. Senator John Blake introduced me to a gentleman on the Senate floor who heard of Turner Syndrome before. Unfortunately, he was aware of it, because he and his wife lost their baby girl in utero to Turner Syndrome. At that moment, he took the time to thank me for my efforts in spreading awareness, especially positive awareness, regarding Turner Syndrome to state legislatures. He went on to tell me how scared he and his wife were, that Drs and medical professionals had little to no knowledge of Turner Syndrome, when they searched the internet they became overwhelmed. He then went to compliment Carly Joy and talk to her. It was then I hugged her as we walked away and thanked God for this crazy journey. Yes, we have cried many, many tears, and we may not always understand why, but in the end she is my MIRACLE. She’s beat the 2% odds and no matter what, as long as we have eachother, our love and faith we CAN and WILL conquer anything! And I will continue to advocate and spread awareness with the help of our legislators, especially Senator Blake!
I’d like to add this is the 6th year I have, with the help of Senator Blake and other congressional leaders, had February Proclaimed Turner Syndrome Awareness Month here in Pennsylvania! That took many hours of writing letters, being a constant pain in the butt, emailing and calling local offices. I was determined to get someone to hear our story, meet my miracle and inspiration. I needed to fight for her and ALL the families who our on this journey, because we are in this together. NO ONE should be alone or scared.”
We hope that Dana and Carly Joy’s story can inspire us all to make a difference for Turner Syndrome. If you are not sure where to start with legislative advocacy, email email@example.com to request materials that will help you get started. If Dana and Carly Joy can achieve so much on their own, just think fo what we could all accomplish, together!
We are excited to launch a new program to connect Turner Syndrome girls with mentors, sisters, and friends. “Star Sisters” is a program to bring together Turner Syndrome girls who are in high school with college age females, to share about their experiences, get advice, and gain positive insight on the next steps after high school.
This will work as a pen pal system, where you apply, we match you with someone of similar interests, and then you’re all set to start writing letters! This is a simple way for TS girls to talk about the challenges they face and raise awareness of their disorder, while also recieving social support in return. We hope that we can have Star Sisters members from across the country, and maybe even around the world!
Here’s how it works:
1. Go to turnersyndromefoundation.org/star-sisters/ to apply- there is a separate application for girls in high school or ages 13-17 as mentees*, and college aged girls as mentors. Mentors do not have to be in college, but do need to be at least 18 years or older.
2. We will review your application and provide you with a match, sharing only the name and address you provide. Please be aware that it can take between 1-3 weeks to recieve a match, depending on current enrollment in the program.
3. Start writing! We encourage communication to happen through letter writing, but The Turner Syndrome Foundation is not responsible for postage, and will not be held responsible for monitoring communication among Star Sisters.
February Awareness Month is coming up, and this is a great way to spread awareness and start the conversation about Turner Syndrome. Please also consider getting involved in our other current programs, including Move! For Turner Syndrome and our legislative campaign. Additionally, your financial support is always appreciated and makes programs like this one possible.
Please email firstname.lastname@example.org with any questions you have.
*parental consent is required for all participants under the age of 18*
Today is WEEK ONE of Turner Syndrome Awareness Month! That means you have an entire month to take action, raise awareness, and make a difference! There is major energy in the Turner Syndrome community right now, and with your help we can keep it moving! Let’s keep the momentum going to make sure every girl receives a timely diagnosis and every woman receives comprehensive care throughout her life!
All month long we’ll be sharing ways you can get involved. This week’s idea is to become a supporter by donating to Turner Syndrome Foundation. This is one of the easiest ways you can make a difference because it takes little time or effort! Every dollar raised allows us to improve and expand our programs and services to increase public awareness of Turner Syndrome.
For more ways to give, click here. Be sure to check back each week for new ways you can get involved this Awareness Month!
©2017 Turner Syndrome Foundation