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Share Your Story

Updated: Aug 22, 2023

At the YWHAG Foundation, we understand that every family has a unique journey, marked by courage, resilience, and unwavering love. Every triumph, every challenge, and every memory, regardless of how small it may seem, is a piece of a larger puzzle that we are collectively trying to solve.

That's why we are reaching out today with a special request: We would like to invite you to share your family's story and experiences dealing with the YWHAG genetic mutation.

There is incredible power in sharing your story. It not only helps raise awareness about the specific condition your family is dealing with, but it also serves to inspire, comfort, and guide others who might find themselves on a similar path. Sharing your experiences can shine a light on the realities of living with the rare disease - the highs, the lows, the unexpected twists, and the moments of hope and joy that carry us through.

Each of your stories is a testament to the resilience of the human spirit and a beacon of hope for other families navigating the complexities of the disease. Whether it's an account of a diagnosis journey, the day-to-day struggles, or the small victories along the way - every story matters.

Here's how you can participate:

  1. Writing Your Story: There's no specific format to follow. Just speak from your heart. Your story can be as short or as long as you wish.

    1. We ask you give a few paragraphs overview and if you so wish we will link so you can share as much as you want

  2. Submitting Your Story: Send your story to with the subject line "Family Story Submission."

  3. Sharing Photos/Videos: While not required, we would like if you included a photo of your child that will be used to create a photo collage with other kids community and a family picture that will be displayed next to your story.

We respect your privacy and will only publish your story with your full consent and approval.

We believe in the power of shared experiences. Your story could be the very thing that provides another family with the courage, inspiration, and strength they need to face another day.

Thank you in advance for your consideration and for being a part of our supportive community.

We look forward to hearing your powerful stories and learning from your invaluable experiences.

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