The strength of humans is beyond imagining. This weekend I was privileged to attend an amazing event. Women Rock it. Pulled together by the determination of a woman who inspires me daily, Hyla Molander. Co-produced by Evan Bailyn, a man who shared vulnerability in front of a large crowd, and re-speaks the human story for how we apply what matters.
The event honored the 10 year anniversary of Hyla’s first husband’s death. Erik Grieve died of Brugada Syndrome. Less than two years ago Hyla found out that her two daughters inherited the disease from their late dad.
Can you imagine the incredible pain of discovering that? Having to fight to get proof. Calling up the pre-eminent scientist of Brugada Syndrome, Dr Charles Antzelevitch and actually connecting with him. Getting evidence and building strength to fight with love. Hyla is on a mission to kick Brugada’s Butt. Hard.
This evening was filled with food, bubbles and tears. Every speaker shared a little of their mission and a whole lot of vulnerability, admitting that while life had taught them a cruel lesson, they had gotten up off the comfy couch after the shock wore off, to find a cure. To change the world. Not to get famous, or to be seen. But to make a difference. To use their conviction and courage to change how the world works. To be a member of the human tribe with heart.
It was a knitting together of a new kind of fabric. The fabric of community that is not afraid to be seen as human. As less than perfect. A community willing to love and laugh and do what is right, in spite of what shows up.
Hyla’s daughter Tatiana sang on stage. The 11 year old with Brugada Syndrome. Who wrote a book that is called “It is okay to cry” illustrated by her 9 year old sister Kiera. Who insisted on sending a book to each child at Sandyhook Elementary School after the hurricane struck last year. Hyla made it happen, with her ‘village’ and her Social Good Project -‘helping the world with our words’. Healing starts with words and is carried by heart.
When Tatiana asked her mom “Why, why is this happening to us?” in reference to the Brugada Syndrome, Hyla told her ‘It is not the why, it is the what. What will you do with what you have been given?’
And I heard the what of every speaker. In their own words.
Heart stopping. Voices in song, voices in love and truth. Voices in compassion and connection.
Dr Antzelevitch shared that The Cardiac Institute at the Masonic Medical Research Lab (www.mmrl.edu), is developing a treatment to prevent ventricular fibrillation in Brugada Syndrome and other SIDS and SADS diseases that cause sudden cardiac death.
The technology will strip a damaged heart and create a ghost heart. Stem cells from the patients own body will be used to re-ignite the energy and cure the heart in the most profound way.
Funds are needed to support this research and cure and all the proceeds from the event go to this cause.
These incredible speakers, dedicated souls and changemakers need support to cure our communities and heal our hearts.
We have to work together because it takes a village to get involved.
What is your WHAT? I would love to know. If you are inspired by the people behind Women Rock it with heart, as much as I am, join the cause, share your story, your inspiration. I am listening.
Joie de Vivre,