On Tuesday, July 2, 2019, Rare Revolution Magazine handed full-day access to their social media accounts over to CureGRIN to give a voice to those diagnosed with GRIN Disorders and the charities that support them.

 

 

July 2, 2019 was the day GRIN Disorders were introduced to the world through social media. RARE Revolution Magazine offered our foundation their platform to participate in a social media campaign #takeovertuesdays.

RARE Revolution Magazine is a collective providing meeting and collaboration space to rare disease foundations based primarily in the UK. Organizing a cohesive media campaign is quite complicated, no wonder there are companies doing just that, charging their clients thousands of dollars. But CureGRIN parents took it upon themselves, after all we became researchers, advocates, doctors, therapists, and public speakers virtually overnight, so nothing is impossible for this group.

It took two very intensive weeks to put together 24 hours of social media content, that not only introduced our children to the world, but also educated public, and highlighted issues that rare genetic mutations bring. The morning of July 2 came and Twitter, Facebook and Instagram feeds lit up with colorful photos of our amazing kids and stories of highs and lows were shared. Hour after hour the feeds were full of medical terms and highlights of research studies. By midnight the frenzy subsided and the statistics of this campaign were revealed. CureGRIN has done it again!

First attempt on social media campaign was an amazing learning experience and a huge success, given there was absolutely no paid content being pushed into the feeds. Just “organic likes” as they call them, almost 28k of them. Numbers are the method of measuring success in this field, but to us the real success is showing a wide audience a world so different from the world they, most likely, live in. The GRIN world has way too many people with tears in their eyes, many hospital stays, surgeries, invasive tests, uncomfortable discussions, and activities our children will never be able to do and enjoy. But this world has an abundance of love, deep compassion, camaraderie.

Most importantly this world has hope, hope for cure, for improvement of our children’s’ lives. And as long as you have hope, you can achieve even the seemingly impossible.

We extend a huge thank you to RARE Revolution Magazine and the absolutely amazing team behind this campaign, it would have never happened without you.