2013-2025
 

Idiopathic Hypersomnia Awareness Week was founded by Hypersomnolence Australia in 2013 as the first global awareness initiative dedicated to Idiopathic Hypersomnia.
 

After 13 years, we have made the difficult decision to bring the Global Idiopathic Hypersomnia Awareness Week (IHAW) to a close.
It has taken a great deal of reflection to arrive here.

When I launched the first idiopathic hypersomnia awareness initiative in 2013, the global landscape looked very different. At that time, there were no organisations anywhere in the world dedicated solely to idiopathic hypersomnia, apart from Hypersomnolence Australia. Reliable information was scarce, research activity was limited, and many people with IH felt isolated, unseen, or unrepresented in their own countries.

IHAW was created to change that — to provide a global, community-led awareness initiative for people living with idiopathic hypersomnia, wherever they live. Over time, it grew into a shared international effort, reaching people across continents, cultures, and languages, and helped connect a global community that previously had little visibility or voice.

However, in recent years, the awareness landscape has changed. The introduction of IH Day has resulted in two separate annual awareness initiatives for the same small, under-resourced community. For a rare disease community, sustaining two parallel awareness events is not realistic. Many people already struggle with the energy, capacity, and health required to engage with even one annual campaign.
Sustainability is also a reality. The IHAW has always been a volunteer-driven initiative, coordinated by me, with limited resources and no paid support. Running a truly global awareness event across time zones, countries, and languages involves an enormous workload, and it is no longer something I can continue to manage without the necessary support.

This decision does not reflect a lack of need for global awareness of idiopathic hypersomnia; quite the opposite. This need remains as strong as ever. What this decision reflects is the need to focus time and energy where they are most urgently required and where they can have the greatest impact.

Retiring IHAW will allow me to redirect my efforts toward broader advocacy priorities, including improving access to effective treatment. While one medication has been approved in the United States, there are currently no approved treatments for idiopathic hypersomnia anywhere else in the world, and many symptoms remain inadequately treated or entirely untreated. In addition, there is an ongoing need for a better understanding, research, and recognition of idiopathic hypersomnia globally.

I want to be clear that I am not stepping away from this work. My advocacy will continue through Hypersomnolence Australia, through ongoing engagement with the global idiopathic hypersomnia community, local and international researchers, industry stakeholders, and through the Living with IH community groups that exist in the USA, Canada, Europe, and Australia/New Zealand. I also remain connected with the Hypersomnia Foundation, and I am already planning my next trip to the United States to attend their Beyond Sleepy Conference and the APSS SLEEP Conference in Baltimore in June. I look forward to reconnecting with my friends and colleagues in the US.

The IHAW has meant a great deal to the global idiopathic hypersomnia community, and it has meant a great deal to me personally. Over the past 13 years, I have met countless extraordinary people, many of whom have become genuine friends, and together we have built something that truly matters. I am profoundly grateful to every advocate, translator, supporter, and community member who contributed to IHAW’s impact.

IHAW may be concluding, but the community it connected and the voices it amplified will continue.

As IHAW comes to a close, I encourage those who wish to continue participating in annual awareness efforts to engage with IH Day. What matters most is that idiopathic hypersomnia remains visible and that our community’s collective voice remains strong and united.

Thank you for walking this journey with me.

Michelle Chadwick 

 

To Amanda Vernon and Jessica Reinsmoen, thank you for all your help and for being there for me, especially during some very difficult times.