What we're about

A diverse group of people with epilepsy / seizure disorders. Sharing stories and making friends.

Upcoming events (1)

SHARE virtual. Topic: Friendships, dating, family. Invite friends & family.

SHARE --- Support, Hangout, And Relax (with others with) Epilepsy

Meeting date/time: Wednesday Dec 15, 7:00 - 9:00 pm

Meeting link: https://meet.google.com/bcg-jugc-deu

Topic: Dating, friendships, family, relationships overall. Invite others in your life to join us, share, and learn.

Description: Let’s talk about how epilepsy has impacted your interactions with others. Dating, friends, family, workplace, and relationships overall. What advice do we have for each other. What challenges have we faced. Invite others in your life to the meeting to learn and share.

You can copy/paste link immediately below to meet others in SHARE and add your story to the SHARE member spreadsheet - a chance to learn about each other, connect, and make friends.

https://docs.google.com/spreadsheets/d/18tlOXvoJnbrqhUdkn154FzY2C-drFwwBIBq6FIvO-VM/edit?usp=sharing

SHARE has 283 members.

Any SHARE questions or suggestions for future meetings? Call me at[masked].

Marc

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List of Epilepsy Support Groups
The groups below are opportunities to connect with and learn from others in the epilepsy community. They are open to everyone. They are not led by medical experts. For more info on a group, please click on the link provided. Most meetings are now virtual due to Covid.

This list will be updated as new groups are added. If you know of another support group to potentially add to the list, please contact Marc Starnes at [masked]

• New York
https://www.meetup.com/NY-Epilepsy-Support/
• The NY Epilepsy Support Network is currently running monthly virtual meetings. They try to facilitate friendships through activities, speakers, and topic led discussions.

• Portland
https://www.meetup.com/epilepsy-portland/
• EPSG (Epilepsy Portland Support Group) creates a safe place for those touched by epilepsy in our community; family, caregivers and friends. At there meetings, everyone has the opportunity to participate, seek counsel and find comfort from shared experiences. When available, they invite specialists to discuss new treatment, research and advancements in the field of epilepsy. They meet monthly.

• Washington DC metro area (DC / Maryland/ Virginia)
https://www.meetup.com/Washington-DC-metro-Epilepsy-Meetup/
• The SHARE group stands for Support, Hangout, And Relax (with others with) Epilepsy. They meet roughly twice a month. Discussion is relaxed, friendly and informal. Each meeting has a topic. Occasional guest speakers. Great chance to meet people with epilepsy, make friends, and share knowledge.

• Bay Area, California
https://www.meetup.com/epilepsy-bay-area/
• The Bay Area Epilepsy Meetup group is a friendly environment for people with epilepsy or family/friends of people with epilepsy to find support, ask questions, share experiences, discuss topics, learn, and make new friends. They have virtual meetings 1-2 times a month. The meetings last about 1.5 hours. They welcome people of all types - if you prefer to be more of a listener, that's cool too.

• Ohio (Cleveland/Akron)
https://www.meetup.com/Cleveland-Empowering-Epilepsy-Meetup-Group/ or https://www.meetup.com/Empowering-Epilepsy-Akron-Support-Group/
• Empowering Epilepsy, based in Cleveland, Ohio is a nonprofit organization that supports people living with epilepsy, and their loved ones. They have several groups for different ages (i.e. 20-34, 35-60, and 60+) that allow participants to meet others who understand epilepsy, learn strategies to more proactively manage their seizures, and take charge of their lives.

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SHARE Rules of Engagement
S-supportive
H-humanizing
A-accepting
R-respecting
E-encouraging

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