Your story can connect and inspire others. You can be the reason to motivate perseverance. Your story can bond us as a community. Your story can be the influence for a researcher to study ASH1L. Your story can move mountains to find a cure for ASH1L children. 

  • No foul and abusive language posts will be approved. Kindly be respectful.

  • All posts will be in English only (other languages will be translated by Google Translate prior to being published)

  • If you wish to stay anonymous, then please select the appropriate choice.

Share your story as a patient, advocate, caregiver or supporter and inspire others
Do you want to stay anonymous?
Permission to publish

Permission to publish - By selecting "YES" you are agreeing to the terms and conditions to submit your story, photo(s) and video(s). By clicking the button "YES", you grant Care4ASH1L permission to use your story, photo(s), video(s), name, and country on our website, and as part of our ongoing programs to increase rare disease awareness. By selecting "YES", you hereby grant permission to Care4ASH1L and its agents or employees to use your ASH1L Warrior’s story, photo(s) and/or video(s) for publication in brochures, newsletters, display boards, social media accounts, and websites without notifying you. You acknowledge that Care4ASH1L may choose not to use the story, photo(s), video(s) at this time, but may do so at its own discretion at a later date. You agree that Care4ASH1L reserves the right to discontinue use of photos without notice. By clicking "YES", you agree that you have read this release and the FAQs below before submitting and that you fully understand the contents, meaning, and impact of this release.

Thanks for submitting your amazing story! Your post will be reviewed by the owner of this website. Please give us 48 hours for the review. Your story will be published soon, if it adheres to all the aforementioned rules.

FAQs related to your story

How do I share my photographs and videos?

If you would like to share the photograph(s) and/or video(s) of your ASH1L Warrior then please email them at This page does not accept uploads. 

Is there a limit to the number of photographs and/or videos that I can share?

No. There is no limit to the numbers of photographs and/or videos you want to share. You can share as many as you wish. However, Care4ASH1L cannot guarantee that all the photographs and/or videos will be shared on social media and/or other materials. 

What social media platforms will my story be shared on?

The story of your ASH1L Warrior will be shared across various social media platforms like, but not limited to, Care4ASH1L website, Facebook, LinkedIn, Twitter, Instagram and WeChat. Additionally, your content and photographs/videos may be used for future fundraising campaigns and presentations for raising awareness, scientific posters and symposiums. It may also be used in brochures, newsletters and display boards. 

Can I withdraw my story from Care4ASH1L?

Yes. This is your story and you own it. To request that your ASH1L Warrior's story, photo(s), video(s) be removed from the website and/or other materials, please submit a written request by email to and we will permanently delete your story, photograph(s), and video(s) from our end. However, if your content or photograph(s) or video(s) were downloaded by other electronic users (like computers, laptops, mobile phones, chromebooks, iPads) prior to being deleted, then we cannot hold them accountable. Also, you will be deleted from any future posters and presentations but we cannot have them removed from the past. 

Can the image(s) and/or video(s) be downloaded?

Yes. Once the image(s) and/or video(s) are published on Care4ASH1L website, they can be downloaded by any electronic user (computers, laptops, mobile phones, Chrome books, iPads). 

Therefore, by sharing your content and image(s)/video(s), you agree to indemnify and hold harmless Care4ASH1L, its agents, volunteers, and employees from any claims. You agree to waive and release any and all claims against Care4ASH1L and its contractors and licensees relating to your name, your likeness, the photo(s) and their uses and/or distribution in any version or media throughout the universe, including without limitation, any rights and claims relating to royalties or compensation, editing, alteration, copyright, distribution, misappropriation, libel, false light, rights of privacy and/or publicity.