Tell us about your child's Sparkle

My child's improvement after 12 weeks of being on DAYBUE aligns with the following sign or symptom of Rett syndrome*: (select one)

Breathing (less breath holding, hyperventilation, or air swallowing)Hand movements or stereotypies (able to break/stop hand stereotypies, more purposeful grasping)Repetitive behaviors (less body rocking, fewer repetitive tongue movements)Nighttime behaviors (less nighttime screaming, laughing, or crying spells)Vocalizations (less screaming or laughing for no reason, vocalizes with intent more often)Facial expressions (less of an expressionless face, fewer face or mouth grimaces)Eye gaze (more use of eye gaze to express feelings, needs, or wishes)Mood (less screaming hysterically for long periods of time and can be consoled more often, fewer spells of panic)

This does not include all of the signs and symptoms of Rett syndrome as listed in the Rett Syndrome Behaviour Questionnaire (RSBQ).

Describe your child's Sparkle*

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Upload a photo

Share a photo that shows your child's Sparkle as you described in this submission. We kindly ask that you submit only photos of your child. Parents/Legal Guardians may also appear in the photo, but other individuals (including other children) should not appear in the photo.

Please confirm:

*I am a parent/legal guardian of an individual diagnosed with Rett syndrome who is over 2 years of age, and if my child is 18 years of age or older, I agree that I have legal authorization to submit information about them to Acadia and provide the consents on this form on their behalf.

*I attest that my child in this photo is a resident of the United States who was prescribed DAYBUE by their Health Care Provider.

*I attest that my child has taken DAYBUE for at least 12 weeks.

Consent for Collection of Personal Information. I agree that when I provide this information about my child’s Sparkle, Acadia and its data processors may collect and process this personal and/or health-related information about me and my child for Acadia’s “Share Your Sparkle” program, including first and last names, contact information, photographs, and the following categories of health information:

Any health conditions your child may have or medications they may be taking
Any symptoms they may be experiencing based on their current diagnoses and treatments
Any additional health-related data based on the above

I understand that if I consent, Acadia will use this information to allow me and my child to participate in its “Share Your Sparkle” program, contact me as needed for further information about my submission, and disclose information about us, including my testimonial and the photograph I am submitting of my child, to the general public on Acadia websites, apps, and social media pages/platforms and in Acadia materials for Acadia’s commercial purposes.

I understand that I am not required to consent to this use and disclosure of our information. However, if I do not consent, my child and I will not be able to participate in Acadia’s “Share Your Sparkle” program, as collection and disclosure of our information is necessary for Acadia to facilitate our participation.

If I consent, I have the right to withdraw consent on behalf of myself and my child at any time by contacting Acadia at privacy@acadia-pharm.com.

*I consent for the collection, processing, and disclosure of my and my child’s personal and health-related information for the purposes described above.

*I grant Acadia permanent and enduring rights to use my and my child’s information and likeness, as described above, for use in its “Share Your Sparkle” program and release Acadia from all claims related to these uses in its “Share Your Sparkle” program and marketing materials including, but not limited to, Acadia websites, apps, and social media pages/platforms.

*I understand and agree to Acadia’s Privacy Policy and Terms of Use

Please verify that you are human*