Awareness is a big part of the Lamb-Shaffer Syndrome community. Our community started off with 3 moms who found each other on social media. That has grown into a community of caregivers now with 150 people in the world diagnosed. We know there are more kids, teens, and adults out there with Lamb-Shaffer Syndrome, we just need to find them.
In January of 2018, our community decided that we needed an awareness month. We took a vote and decided that June would be our official Lamb-Shaffer Syndrome Awareness Month. Right around that time we realized we needed a ribbon as well so our community could spread the word about our rare syndrome. Our ribbon is Navy with a burst of Gold in the middle. That gold represents the sunshine our kids light to the world. This ribbon and our month represent our passion, our mission, and our drive to find more kids and learn as much as we can about our rare syndrome. We can't do it alone though, WE NEED YOUR HELP!
Please help us by sharing our posts on Facebook and Instagram. Also, please use the following hashtags:
If you know someone who may be affected by Lamb-Shaffer Syndrome and needs help with the proper testing, please e-mail us @ firstname.lastname@example.org
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