Channeling Hope: Why We Recognize KCNQ2 Awareness in March

Each year in early March, our global community recognizes KCNQ2 Awareness Day on March 2 as part of KCNQ2 Awareness Week.

As Executive Director of KCNQ2 Cure Alliance, I see the strategy behind it. As a parent of a child with a KCNQ2-related disorder, I feel the hope behind it.

The timing is not random. The dates are not accidental. They are intentional.

Why March?

March is Developmental Disabilities Awareness Month.

While many individuals with KCNQ2-related disorders experience seizures, not all do. Some never develop ongoing epilepsy. Yet, many live with developmental delays, intellectual disability, motor challenges, autism features, and lifelong neurological differences.

KCNQ2-related disorders are about more than seizures.

By recognizing KCNQ2 Awareness Week during Developmental Disabilities Awareness Month, we acknowledge the full spectrum of this diagnosis. We stand alongside the broader disability community. We affirm that our loved ones deserve visibility, inclusion, research, and support in every aspect of their development and lives.

March places KCNQ2 in a larger conversation about disability awareness, acceptance, and advocacy.

Why is KCNQ2 Awareness Day observed on March 2?

March 2nd is International KCNQ2 Awareness Day.

We chose this date because of the “2” in KCNQ2. But that number represents something deeper than a clever connection.

The “2” reflects partnership.

Progress in rare disease happens when two forces work together: Families and science.

Nothing in our community moves forward on its own. Families share lived experience, stories, data, and urgency. Researchers bring scientific expertise, new insights, and a commitment to breakthroughs. When these two forces meet, discovery accelerates, and we advance towards better care for our loved ones.

March 2 symbolizes unity. It is a moment when families, clinicians, researchers, and partners around the world speak the name KCNQ2 together.

In rare disease, visibility matters. A dedicated day creates focus. Focus creates momentum. Momentum drives progress.

A Week of Reflection and Recognition

Our Awareness Week spans March 1 through March 7.

Within that week, March 5th holds special meaning as KCNQ2 Remembrance Day. It is a day to honor the children and individuals we have lost, to hold space for grief, and to recommit ourselves to building a future with better answers.

Awareness is not only about education. It is about remembrance, recognition, and resolve.

Channeling Hope

Channeling Hope is our Awareness theme each year because it reflects who we are as a community.

We take something complex and often overwhelming, channelopathies, and we direct our energy toward progress.

We channel questions into research.
We channel isolation into connection.
We channel uncertainty into advocacy.
We channel science into solutions.

And we channel hope into forward movement.

Awareness Week is not just a date on the calendar. It is a reminder of who we are working for and why this work matters.

It is a reminder that “rare” does not mean “invisible”.

It is a reminder that partnership fuels progress.

It is a reminder that when we stand together, we are stronger.

Thank you for being part of this community. And thank you for helping us channel hope into a future with better outcomes for all affected by KCNQ2-related disorders.

With gratitude,

Scotty Sims
Executive Director
KCNQ2 Cure Alliance
KCNQ2 Parent