Skip to main content

Share your story with us!

We would love to share your story as this helps us raise awareness about the realities of Fowler’s Syndrome. To do so, we need a paragraph on you and your journey with Fowler’s Syndrome and CUIR (up to 6500 characters).

We also need some high res photos, preferably without filter, that illustrate your story.

If you have social media we would also love to know your Instagram or Facebook handle.

TERMS OF USE AGREEMENT: STORY SUBMISSION. All contents that you submit may be used at FSUK’s sole discretion. FSUK reserves the right to change, condense or delete any content on FSUK’s website that FSUK deems, in its sole discretion, to violate the content guidelines or any other provision of this Agreement. FSUK reserves the right to remove or refuse to post any submission for any or no reason, in its sole discretion. You acknowledge that you, not FSUK, are responsible for the contents of your submission. None of the content that you submit shall be subject to any confidentiality obligations on the part of FSUK, its agents, subsidiaries, partners, or third party service providers and their respective directors, officers and employees. FSUK does not guarantee that you will have any recourse through FSUK to edit or delete any content you have submitted. However, you may request FSUK to remove your post from the Site but you must do so in writing and submit it to the following email address: For any content that you submit, you grant FSUK a perpetual, irrevocable, royalty-free transferable right and license to use, modify, delete it in its entirety, adapt, publish, translate, create derivative works from and/or distribute such content and/or incorporate such content into any form, medium or technology without compensation to you. By submitting your email address, you agree that FSUK and its third party service providers may use your email address to contact you. You agree to indemnify and hold FSUK, its officers, directors, employees, agents, and third party service providers, harmless from any third party claims, damages, losses, liabilities, judgments, costs or expenses (including reasonable attorneys’ fees) relating to any material you have posted.