June is Loeys-Dietz Awareness Month! 

We kicked off the month by participating in The Marfan Foundation’s Virtual Walk for Victory. This fundraising event supports patients, families and caregivers through essential research and resources on genetic aortic conditions such as Marfan Syndrome, Loeys-Dietz Syndrome, and Vascular Ehlers-Danlos Syndrome. 

Beyond This had 21 team members and raised $1,179. Many of you sent in some awesome pictures of your virtual walk and are helping raise awareness through social media. This is a huge accomplishment and I want to thank everyone who participated!

Throughout the month we had “Motivation Monday”, “Web Resource Wednesday”, and “Fun Fact Friday”. All of these posts/stories were shared on my Instagram page and are saved to the stories. Instagram has been a great way for me to spread awareness, so make sure to follow the account (@beyondthis_blog) for day-to-day information and inspiration. 

During the last full week of June, the Loeys-Dietz Foundation hosted a virtual spirit week. It was so much fun to see the Loeys-Dietz community dress up and spread awareness. It was also a great way to start conversations and spread awareness. Monday was Loeys-Dietz Foundation swag day, which was an opportunity to wear “Loeys-Dietz” on our clothes and hats and answer the “What does ‘Loeys-Dietz’ mean” questions when people tried to identify the logos we were sporting. If you do not have Loeys-Dietz merch, head over to the Loeys-Dietz Foundation website to order some because, as we discovered, wearing is caring!

At the end of the month, I was nominated for “Rookie of the Year” in the WEGO Health awards. I am a WEGO Health Patient Leader. WEGO Health is an organization that hosts a network of Patient Leaders who advocate for a variety of different health conditions and concerns. This provides collaboration between patients and organizations in the healthcare industry for better patient support. This nomination is exciting for many reasons. First, Loeys-Dietz Syndrome is not in their database, but they are adding it to their system next month! Adding a new rare disease to a network of established Patient Leaders and healthcare organizations is an exciting step in spreading awareness. This is also a network of thousands of patient leaders, so to be nominated for an award is a huge honor. Finally, I am new to the blogging world, I am still learning and finding the best ways to advocate and share empowering stories. I am amazed by all the people who have read my blog and continue to follow my story, the fact that someone has nominated me for this award means a lot to me, so thank you to whoever did it. 

The way this award works is that after a Patient Leader is nominated, they can be endorsed by anyone. The 3 Patient Leaders with the most endorsements and 3 Patient Leaders voted on by a committee of judges, will become finalists. There will be one winner chosen among the 6 finalists. Endorsements start July 1st, you can use this link to endorse my nomination.