A MESSAGE FROM LIZ CARMINES
I am formerly the program development coordinator at the Turner Syndrome Foundation, but forever an advocate! It's one of those things where once you become aware of Turner Syndrome, you can never become unaware of it.
I first found out about Turner Syndrome when I was a college student. I don't personally have Turner Syndrome, myself or know anybody personally, well now I do! But before the Turner Syndrome Foundation I didn't know anyone personally who was impacted by it. I sort of just happened to find the foundation as a college student and I started interning there, and I became super-super passionate about it, and I was really grateful to get to continue being part of the team in a greater capacity. And I think that's one of the things that inspired me.
I first became knowledgeable about Turner Syndrome as an intern, and I became so passionate about it that I wanted to continue to be a part of the mission and do what I could to make a difference through all the different things we were doing and, again, that really comes back to awareness. There is so much power in raising awareness to other people. I've heard stories from people that once people become aware of TS they can't become unaware, and even if they don't take action, you know, it plants a seed. It can really benefit the whole community in the long run to have a greater awareness because then you ultimately have more people that do become passionate, do become knowledgeable, do advocate, and generally just know how to treat other people with more kindness and empathy and compassion.
People who we all have differences and when you're aware of it you just understand how to be better accommodating to other people with different needs, how to accept and love each other for our differences. And I think that's really what I've taken with me. I will forever be someone who, you know, cheers on this community. This is such a vibrant community. I love all of the passion, and one of the things that I really want to communicate is. that I've seen some people who are pretty excited about getting involved with the Turner Syndrome Foundation, which is so exciting. But don't let that flame die out. Don't just look at people like Nicole, and Susan and Kayla and think, oh the work is already done so where is there room for me to make a difference. There's truly always more work that can be done, and each person brings a unique skill set that kind of creates an opportunity for advancement of the mission. And so whether you have lots of time in the day to dedicate or whether all you can do is just repost things on social media, if you're feeling fired up and excited right now, just know that you are really welcome to be a part of making that change and that there is definitely room for you to contribute in whatever capacity, you're wanting to contribute.
You might say well, I already did the My Story, I already signed the petition, I already did the registry, I say... Do it again! Your life changes over time so do the registry once a year, you know, because you're always changing and it gives the Turner Syndrome Foundation updated data, annually. Same with the TSRX.us PIN. If you signed the petition a year ago. Sign it again! There are new people looking at new data and, you know, new legislators in office, things like that. If you did the My Story a year ago, what about doing a follow up My Story a year later and sort of a reflection piece? I think Susan could have a lot of fun with that.
And so, again, even if you're you've already done the things before, just know that you can always do them again. There's always new ways that you can be involved and contribute to really having a greater impact. I just really hope to see this continue and I know it will because this community is so amazing and so passionate and really ready to continue to make change!