CURE SYNGAP1 Connect

Be the first to hear about SYNGAP1 studies, trials, and research opportunities

If you are the parent or primary caregiver of a SYNGAP1 patient, we encourage you to complete the Contact List form below. This information will be used to share research and clinical trial opportunities, educational and advocacy resources, and to help families connect with one another. Your information will never be shared for commercial purposes. If you’re unsure whether you’re already listed or need to update your record, just send us an email. (info@cureSYNGAP1.org).

Other community members who are interested in learning more about SYNGAP1-Related Disorders, supporting our community of families, and staying up-to-date on events and research are encouraged to sign up for our Newsletter by entering your email at the bottom of this page.

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Your First Name *

Your Last Name *

Your email *

Your phone number

Language preference *

Additional parent/caregiver first name

Additional parent/caregiver last name

Additional parent/caregiver email

Additional parent/caregiver phone

What companies do you and/or your spouse/partner work for?

First name of individual with SYNGAP1 *

Last name of individual with SYNGAP1 *

Individual with SYNGAP1’s date of birth (YYYY-MM-DD) *

Individual with SYNGAP1’s gender *--- Select Choice ---MaleFemalePrefer not to say

How would you describe the individual with SYNGAP1's ethnicity or cultural background? (Please select the best fit; if multiple apply, please select 'Mixed or Multiracial' or 'Prefer to self-describe'.)

• Hispanic or Latino/a/x
• Middle Eastern or North African
• South Asian
• East Asian
• Southeast Asian
• Sub-Saharan African
• European
• Indigenous or First Nations
• Pacific Islander
• Mixed or Multiracial
• Prefer to self-describe
• Prefer not to say

Please provide any additional details about the individual with SYNGAP1's ethnicity/cultural background (optional).

How would you describe the individual with SYNGAP1's race? (Please select the best fit; if multiple apply, please select 'Mixed or Multiracial' or 'Prefer to self-describe'.)

• Black or of African descent
• White
• Asian
• Indigenous or First Nations
• Pacific Islander
• Mixed or Multiracial
• Prefer to self-describe
• Prefer not to say

Please provide any additional details about the individual's race you'd like to share (optional).

Your relationship to individual with SYNGAP1 *--- Select Choice ---ParentPrimary CaregiverGuardian

How did you first engage with our community? *--- Select Choice ---Search EngineSocial MediaReferred by Physician/Genetic CounselorReferred by Another FamilyNews ArticlePodcastOther

Genetic Mutation Use the coding DNA or protein syntax, which begin with a “c.” and a “p.” You can find these in your genetic report. For example, “c.490C>T” or “c.333delA” or “p.Arg621” *If you are uncertain or prefer not to provide this information, please indicate that below. *

Do you think your child is having seizures? *

• Yes
• No
• Maybe

Please tell us more about frequency and type of seizures

Do you have another child with a SYNGAP1 mutation? If you check yes, please register again for that child or email info@cureSYNGAP1.org. *--- Select Choice ---YesNo

How many biological siblings does the individual with SYNGAP1 have? (for potential study recruitement)

Please note each sibling's gender and birth year

Street address

City

State/Province (If not applicable in your country, enter N/A) *

Postal code

Country *

Preferred method of contact for study recruitment--- Select Choice ---EmailTextPhone call

DNA with study

Do you agree that CURE SYNGAP1 (fka SynGAP Research Fund) may contact you?

• I agree and acknowledge that I am authorized to provide the contact list information about myself, my family, and the person(s) with SYNGAP1-related-disorders. I also understand and agree that I am subscribing to CURE SYNGAP1's newsletter. CURE SYNGAP1 may also contact me to provide information about SYNGAP1-related disorders, future research studies and trials, and activities and programs offered by CURE SYNGAP1 (fka SynGAP Research Fund).

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