Since February has been deemed Awareness Month for Turner Syndrome, it is the time of year we always look forward to. February is an opportunity to take extra strides in passing along information about Turner Syndrome to our connected community and beyond, and inspire others to get involved with advocacy and volunteerism. However, just because February came and passed, that does not mean we should stop with all the great work we did throughout the month. Awareness Month generates momentum that should be carried through the rest of the year as well!
Awareness Month this year was all about becoming an advocate. Becoming educated about an issue is empowering, because it allows you to understand the needs of those affected by it, and discover what you can do to help those needs become met- that’s advocacy! So, you may know about Turner Syndrome, but what can you do to advocate for women, girls, and families who experience the challenges it comes with?
Personal advocacy is a good place to start, which involves simply talking to the people in your existing social circle about Turner Syndrome. Start by asking people if they have ever heard of Turner Syndrome, and urge them to take the steps to become an advocate as well. Not only is this a good way to spread awareness of Turner Syndrome, but also to grow the population of people advocating for it.
Another form of advocacy that we have taken a special interest in is legislative advocacy. By working with members of Congress, we hope that national solutions can be implemented to support the population with Turner Syndrome. Advocating for centers of care, funding for medical research, and more are all important steps to be taken. You can advocate for these goals by writing letters and calling the offices of your local legislators, and explain to them why Turner Syndrome needs to be on the national agenda. For more information about how to do this you can email firstname.lastname@example.org.
A major problem we find in our work is that many professionals do not have adequate knowledge about Turner Syndrome to provide quality care that the affected women and girls deserve. One simple way you can advocate is by sharing information with your doctor’s office about Turner Syndrome, as that may inspire them to learn more and become advocates themselves. Similarly, sharing information with the teachers and administrators at your local schools is another great way to spread awareness among a population that has a direct impact on the rising generation, and the sense of understanding gained through knowledge will significantly help girls in school who have Turner Syndrome.
You can also advocate in your local community by hosting an event! Hold a fundraiser or a walk, or ask your boss to have a casual day for Turner Syndrome. You can sign up to host an event or volunteer with us at https://form.jotform.com/53066358197161. We are always looking for passionate people to join us in advocating for Turner Syndrome, and you could be the next person that will make a major impact on the lives of women and girls with Turner Syndrome.
Even though February is over, our work in advocacy has not ended. Please consider taking action for Turner Syndrome women and girls worldwide using these tips for advocacy, so that next year February Awareness Month can be even bigger and better!