Part 2: The 2024 Breakthrough Summit, Tote & PAOs
Summit Recap: Over the course of the three-day event, I met many other Patient Advocacy Organizations with shared challenges and successes.
Category: Raising Awareness
Alone we are Rare. Together we are Strong.
The majority of rare disorder patients do not have an Advocacy Organization representing them. Read how the MdDS Foundation is advocating for you, today on the blog.
A Journey Through Uncharted Waters: My Life with MdDS
Eleven years ago, Sylvia Hemby’s joyful vacation in Hawaii turned into a challenging experience due to her diagnosis of Mal de Débarquement Syndrome (MdDS). The disorder caused a persistent sense of rocking. Yet, she found solace in creating seashell art, channeling her struggles into beauty and resilience, representing her journey of growth.
June 2024 Newsletter
Exciting news you can use! This edition is filled with important information that you definitely want to read.
“MdDS – the struggle is real” by Dawn
“I hope to help people understand how debilitating MdDS is and how frustrating it is to look fine on the outside but silently suffer.” ~Dawn #thestruggleisreal
I’m not Dawn yet!
For some, MdDS is a cloak of darkness that settles over them. But Dawn McGhee is helping people who struggle like herself, to find light in the darkness.
Rocking Candles, Giving Back since 2018
For eight years, Kate has been explaining to others what daily life is like for MdDS sufferers. An MdDS warrior herself, she has been creating custom candles and giving back through donations to support research so we can all “get off that boat.”
Breakdowns & Buddha Bowls, by Andrea Smit
Did you know? MdDS can be triggered by an event that doesn’t involve travel. Here is an unusual case, in a word: jishin-yoi Read & Learn!