Submit Your Story — CACNA1A Foundation

Share your own story

Share your loved one’s story.

Individual CACNA1A stories help us raise awareness and advocate for funding and research. They also help newly diagnosed families feel less alone in the world of rare diseases. Please consider sharing your story and making a difference in the lives of families affected by CACNA1A. Pictures and videos, even without telling your story, are immensely helpful to accomplishing our mission of raising awareness, funding research and supporting families.

To submit photos or video clips for use on our website, brochures, social media, and/or other promotional materials, please email them to info@cacna1a.org.

Tell us your story here. Please share as much or as little as you would like. All fields are optional. Please use the following questions as a guide.

Name

First Name

Last Name

CACNA1A Patient's Name

First Name

Last Name

If known, what is the variant?

Gender

Current Age?

Age of diagnosis?

Is there a family history of CACNA1A?

Where are you located?

(city, state, country)

When did you become aware that development was not typical?

Were developmental milestones met?

Description of developmental delays?

Medical issues and history (seizures? Hemiplegic migraines? ataxia? nystagmus?)

Other diagnoses in addition to CACNA1A?

What led to a diagnosis? (What was your path?)

What are the individual’s strengths?

What does he/she struggle with?

What therapies have been helpful?

What types of educational/related services supports does the individual receive?

What advice do you have for newly diagnosed families?

Any other information you would like to share

Would you be willing to submit your genetic report to the CACNA1A Foundation’s Scientific Advisory Board?

Would you like to share your story anonymously?

We will not include photos or any identifying information.

Yes

Agreement of Permission

I hereby grant permission to the CACNA1A Foundation (CF) and its agents or employees to use the photo(s), video(s), or other content (including without limitation written material submitted in connection with a patient story) (collectively, “User Content”), which I have submitted for publication in brochures, newsletters, display boards, social media accounts, and websites without notifying me. I understand that CF may edit or revise User Content for inclusion in those materials as well, and hereby grant permission for it to do so. I also acknowledge that CF may choose not to use my User Content at this time, but may do so at its own discretion at a later date. I understand that once User Content is posted on the CF website, those images and other materials can be downloaded by any computer user. Therefore, I agree to indemnify and hold harmless CF, its agents, volunteers, and employees from any claims. I agree to waive and release any and all claims against CF and its contractors and licensees relating to my name, my likeness, the User Content 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, whether on behalf of myself or my child. CF reserves the right to discontinue the use of the User Content without notice. To request that your child’s photo(s) or other User Content be removed from the website and/or other materials, please submit a written request by email to info@cacna1a.org and allow a reasonable time thereafter for a response. I have read this release before signing below and I fully understand the contents, meaning, and impact of this release.

I understand and agree.

Please send any pictures and/or videos to accompany your story to info@cacna1a.org.