Coalition to Cure CHD2
@curechd2.bsky.social
Patient advocacy group serving those affected by CHD2, a rare developmental & epileptic encephalopathy (DEE) associated w/Jeavons/EEM, photosensitive seizures, autism + intellectual disability. Accelerating research & supporting community www.curechd2.org
Please complete the 15 minute survey (surveymonkey.com/r/S8KC9PD). Initial results will be presented at CCC’s conference this June in Colorado.
There will be another follow-up survey for participants in the future.
There will be another follow-up survey for participants in the future.
CHD2 - CCC
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May 9, 2025 at 3:01 PM
Please complete the 15 minute survey (surveymonkey.com/r/S8KC9PD). Initial results will be presented at CCC’s conference this June in Colorado.
There will be another follow-up survey for participants in the future.
There will be another follow-up survey for participants in the future.
Purpose:
- To understand how effective ACZ is on CHD2-related seizure control by comparing it to other ASMs.
- The goal is to see if ACZ should be a clear first-defense drug for CHD2-related seizures (so no more guessing games)
- To understand how effective ACZ is on CHD2-related seizure control by comparing it to other ASMs.
- The goal is to see if ACZ should be a clear first-defense drug for CHD2-related seizures (so no more guessing games)
May 9, 2025 at 3:01 PM
Purpose:
- To understand how effective ACZ is on CHD2-related seizure control by comparing it to other ASMs.
- The goal is to see if ACZ should be a clear first-defense drug for CHD2-related seizures (so no more guessing games)
- To understand how effective ACZ is on CHD2-related seizure control by comparing it to other ASMs.
- The goal is to see if ACZ should be a clear first-defense drug for CHD2-related seizures (so no more guessing games)
The study is being led by Dr. Rhys Thomas and his team from Newcastle UK
Key participants:
-Those starting acetazolamide in the last 12 months.
-Those starting ANY new anti-seizure medication in the last 12 months.
Key participants:
-Those starting acetazolamide in the last 12 months.
-Those starting ANY new anti-seizure medication in the last 12 months.
May 9, 2025 at 3:00 PM
The study is being led by Dr. Rhys Thomas and his team from Newcastle UK
Key participants:
-Those starting acetazolamide in the last 12 months.
-Those starting ANY new anti-seizure medication in the last 12 months.
Key participants:
-Those starting acetazolamide in the last 12 months.
-Those starting ANY new anti-seizure medication in the last 12 months.