LGS Foundation

Caregiver of Adults with LGS Support Group
2022-05-24 20:00 - 21:00 (America/Kentucky/Louisville)
Living with LGS is a marathon, not a sprint.
Adult caregivers, Geraldine and Tracy host a monthly support group meetup to discuss the challenges associated with caring for an adult with Lennox-Gastaut Syndrome.
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Support Group.
To join our online support group and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

De-Stress Fest Support Group
2022-06-14 20:00 - 21:00, 2022-07-12 20:00 - 21:00 (America/Kentucky/Louisville)
Living with LGS can be stressful.
Join us for real talk on caregiver burden, stress, and self-care solutions — Yes, Self Care!
Come to De-stress as we support each other on this journey.
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Support Group.
To join our online support group and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

2022 International Family & Professional Conference
2022-06-17 07:00 - 2022-06-19 13:00 UTC | Gaylord Texan Resort & Convention Center, 1501 Gaylord Trail, Grapevine, TX, 76051, United States
LGS Foundation Family & Professional Conference
June 17-19, 2022
The LGS Foundation is so excited to host the 2022 LGS Foundation Family & Professional Conference, at the Gaylord Texan Resort & Convention Center in Grapevine, Texas. This in-person and virtual conference will bring together more than 350 participants from around the globe to learn from the LGS experts. Topics include diagnosing and treating LGS, the latest in LGS Research, emerging treatments, managing LGS-associated disorders, managing LGS at home and in the community, and much, much more!
Register Now

Caregivers of Adults with LGS Support Group
2022-06-22 20:00 - 21:00, 2022-07-27 20:00 - 21:00 (America/Kentucky/Louisville)

Dad to Dad Support Group
2022-07-20 20:00 - 21:00 (America/Kentucky/Louisville), 2022-08-17 20:00 - 21:00 (America/New_York)
Dad’s and our Male caregivers are the centers of the LGS Family.
Join our exclusive support group for male caregivers and Dads as we talk, share and offer encouragement to each other along this LGS journey. Bring your favorite beverage and carve out some time for just you!

This monthly meetup is available exclusively to LGS male caregivers and Dad’s who are members of the LGS Foundation Online Support Group.
To join our online support group and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

Swing FORE A Cure
2022-07-23 12:00 - 20:00 UTC | Golf Club of Dublin, 5805 Eiterman Rd, Dublin, OH, 43016, United States
Join Us For The First-Ever Swing FORE A Cure For LGS
Saturday, July 23, 2022
Dublin, Ohio
LGS is a severe form of epilepsy that typically becomes apparent during infancy or early childhood. Children with LGS experience frequent, uncontrollable seizures and suffer from many different types of seizures. Some children with LGS survive into adulthood and the majority are completely dependent on others for their daily care.
LGS may be treated with drugs, diets, neural stimulating devices, brain surgery, and/or alternative therapies, but of the more than 30 therapies that exist to treat seizures, no specific therapy is effective to stop the seizures in LGS. For most patients, the odds of achieving seizure freedom are less than 15% and the odds of having typical intellectual ability are less than 5%.
Our goal at the LGS Foundation is to end the devastation and suffering caused by LGS.​ You can help us by participating in or donating to Swing FORE A Cure!
Space is limited. Register your team early!

LGS: Standing Together. Stronger Together. - Monthly Support Group
2022-08-09 20:00 - 21:00 (America/New_York)
Topic: LGS Safety- Beyond the Seizures
Please join us for an in-depth discussion on issues facing the LGS caregiver when trying to keep their loved ones safe.
From head injuries, elopement, choking hazards, and more, caregivers are invited to share their challenges and tips for protecting all family members from harm.
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Support Group.
To join our online support group and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

Caregivers of Adults with LGS Support Group
2022-08-22 20:00 - 21:00 (America/New_York)
Caregivers of Adults with LGS Support Group

Living with LGS is a marathon, not a sprint. Adult caregivers, Geraldine and Tracy host a monthly support group meetup to discuss the challenges associated with caring for an adult with Lennox-Gastaut Syndrome.
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Support Group.
To join our online support group and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

LGS: Standing Together. Stronger Together. – Monthly Support Group
2022-09-13 20:00 - 21:00 (America/New_York)
Topic: Respite & Self-Care- What does that look like for YOU?

Respite can be defined as “a short period of rest or relief from something difficult or unpleasant.” but how does that really look for each of us individually? Come to our next meeting and share your respite story with others and learn how to better provide that ‘short period of rest’ so you can recharge and resume caregiving with a full tank.

This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

Dad to Dad Support Group
2022-09-21 20:00 - 21:00, 2022-11-16 20:00 - 21:00, 2023-01-18 20:00 - 21:00 (America/New_York)
Dad’s and our Male caregivers are the centers of the LGS Family.
Join our exclusive support group for male caregivers and Dads as we talk, share and offer encouragement to each other along this LGS journey. Bring your favorite beverage and carve out some time for just you!
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

Caregiver of Adults with LGS Support Group
2022-09-26 20:00 - 21:00, 2022-11-28 20:00 - 21:00 (America/New_York)
Living with LGS is a marathon, not a sprint.
Caring for an adult with LGS can be every bit as demanding as caring for a child with LGS, and the need for support is great. Not only do the needs of the individual with LGS change in adulthood, but, so, too, do the needs of aging caregivers. We invite parents and caregivers of adults with LGS to join us for discussion and support as together we face the ever-changing challenges associated with LGS. (Parents of adolescents are also welcome to join the support group.)
Adult caregivers, Geraldine and Tracy host a monthly support group meetup to discuss the challenges associated with caring for an adult with Lennox-Gastaut Syndrome.
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

LGS: Standing Together. Stronger Together. – Monthly Support Group
2022-10-11 20:00 - 21:00 (America/New_York) | Virtual
Topic: IEPs & Back to School – Is Everything Going As Expected?

This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

Dad to Dad Support Group
2022-10-19 20:00 - 21:00 (America/New_York) | Virtual

Caregiver of Adults with LGS Support Group
2022-10-24 20:00 - 21:00 (America/New_York) | Virtual

Halloween Masquerade Ball
2022-10-31 18:00 - 20:00 UTC | Disneyland Hotel, 1150 W Magic Way, Anaheim, CA, 92802, United States
Halloween Masquerade Ball at Epilepsy Awareness Day at Disneyland
Monday, October 31, 2022 | 6:00pm PT
Disneyland Hotel Conference Center – Anaheim, CA
Join us for the FIRST-EVER Halloween Masquerade Ball at Epilepsy Awareness Day at Disneyland, co-hosted by Sofie’s Journey and the LGS Foundation.
This event is free to all registered Expo guests. Make sure to register for the Expo; you’ll get an email back with the hotel and ticket link!
The Halloween Masquerade Ball is free to the first 1,500 guests (max capacity, sorry). No need to RSVP! Just show up to the Expo.
LEARN MORE

LGS & DEE Caregiver Meetup Hosted by the LGS Foundation
2022-11-01 11:00 - 12:00 (America/Los_Angeles) | Disneyland Hotel, 1150 W Magic Way, Anaheim, CA, 92802, United States
Epilepsy Awareness Day at Disneyland
Sleeping Beauty Pavilion

Tuesday, November 1, 2022 | 11:00am – 12:00pm PT

The LGS Foundation welcomes ALL caregivers from the Developmental Epileptic Encephalopathies (DEEs) Community as we gather to build our caregiver support network, share resources, and learn from one another.

Register to Attend

"one, one thousand..." Photo Exhibition Reception with Discussion
2022-11-01 17:00 - 19:00 (America/Denver) | University of Colorado, 13080 E. 19th Ave., Aurora, CO, 80045, United States
Join us in person or online to view “one, one thousand…” and hear talks by the artist/photographer and her sister Lori, mother of David, who is diagnosed with Lennox-Gastaut Syndrome.
“one, one thousand…” is an unconventional documentary and a different kind of love story. It exposes the impact that Lennox-Gastaut Syndrome has on a mother and son’s experiences of life-long care. Debe Arlook’s intimate photos depict the inner and outer worlds of the relationship between the artist’s nephew and sister. The title references counting the length of a seizure.

University of Colorado Anschutz Medical Campus
Fulginiti Pavilion for Bioethics and Humanities
13080 E. 19th Ave. Aurora, CO 80045

Click Here to Learn More
Donate to the “one, one thousand…” fundraiser to benefit the LGS Foundation

This event is not hosted by the LGS Foundation. This event was submitted to the LGS Foundation’s Calendar of Events by a community member. To submit your LGS-related event, please complete the Submit an Event request form.

Cooking for a Cure for LGS
2022-11-05 10:30 - 17:00 (America/New_York) | Borden Bargains, 555 E Water St, Borden, Indiana, 47106
This year for LGS awareness, I am hosting “Cooking for a Cure for LGS”! I have rented the pop-up shop at Borden Bargains. We’ll have chili, vegetable soup, and chicken and dumplings, as well as a bake sale and snack items. All proceeds will go to the LGS Foundation to help families like mine!!
Come visit Borden Bargains on Saturday, November 5th from 10:00am – 5:00pm ET and shop their great inventory and enjoy some of my delicious food!
Borden Bargains
555 E Water Street Borden, IN 47106

Click Here to Learn More

This event is not hosted by the LGS Foundation. This event was submitted to the LGS Foundation’s Calendar of Events by a community member. To submit your LGS-related event, please complete the Submit an Event request form.

Every Moment Matters Awareness Dinner Event
2022-11-05 18:00 - 22:00 (America/Los_Angeles) | Birch Aquarium, 2300 Expedition Way, 92037, La Jolla, CA, 92037, United States
Every Moment Matters Awareness Dinner Event
Saturday, November 5, 2022 | 6:00pm PT
Birch Aquarium – San Diego, CA
Join us for an evening of making every moment matter. Celebrate with us as we raise funds to help families impacted by LGS, share advances in LGS research and care, and remember that happiness lives inside life’s moments.

Sunset Happy Hour
Dinner by The French Gourmet
Short Program featuring Dr. Scott Baraban & Cronutt the Sea Lion and Tracy Dixon-Salazar, PhD
Special Performance by Christina Apostolopoulos
VIP Aquarium Experience

Learn More

LGS: Standing Together. Stronger Together. – Monthly Support Group
2022-11-08 20:00 - 21:00 (America/New_York)
The LGS Support Community- We Are Stronger Together
The LGS community is growing rapidly, and we couldn’t be happier that, finally, our families are finding us.
Not all that long ago, this wasn’t the case for LGS caregivers. We longed to be a little less ‘rare’ and find others who understood the struggles, the love, and the heartache, spoke the language of LGS, and offered up valuable tips, resources, and comfort.
With an online family community approaching 8,000 members from around the world, we finally have a tribe of active, compassionate individuals who are there to lift one another on the dark days and celebrate the small victories when they come (and they DO come).
And now, we have a monthly support group that all our caregivers are welcome to join. Here, we can come together virtually, get to know one another, and share our stories. Tears are shed, but laughter is not far behind. We’re resilient, we’re never giving up, and we’re STRONGER TOGETHER!
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

LGS Research Roundtable @ AES
2022-12-02 11:00 - 14:30 UTC | One21 @ Johnny Cash’s Bar & BBQ, 121 3rd Ave S., Nashville, TN, 37201, United States
Advancing Clinical Research In LGS, Starting The Conversation
Friday, December 2, 2022 | 11:00am CT
One21 at Johnny Cash’s Bar & BBQ – Nashville, TN
Every year, the LGS Foundation organizes the LGS Research Roundtable at the American Epilepsy Society’s (AES) annual meeting in an effort to #FreeTheData. Join us to learn about how we are working to advance clinical research in LGS as we prepare for the upcoming 2023 LGS Meeting of the Minds on Advancing LGS Clinical Research. Visit our website to view the full Research Roundtable agenda.
In-Person and Virtual Opportunities to Attend.
Learn More

The Santa Express BELIEVE Expedition
2022-12-11 16:30 - 21:00 UTC | Hillview Police Department, 283 Crestwood Rd, Louisville, KY, 40229, United States
Join us for a full night of family fun!
Grab your kids and bring them along on an expedition to find the spirit of Christmas. The little ones already believe in the magic of Christmas, but this expedition is so full of magic and Christmas spirit that once you travel this journey/expedition, there is no way you can doubt that Santa really exists! Challenge those to take the journey! As you travel through our Winter Wonderland, your train will make four stops where our crew members will help you uncover the clues that will lead you to the station where the Magic will really begin. You will find concessions that will include Hot Chocolate, Coffee, and other snacks that will warm your bones while enjoying the Movie Polar Express.
LGS Warrior, Nash, is an Honorary Guest and his Mother, Candice, will be sharing their LGS story with guests.
Ticket Info: Tickets are $25 per family which includes your golden tickets, the clues along with a few magical surprises along the way, the movie and to top it off, each will leave with a shiny silver bell!
The hunt is all within 10 miles of our offices so no need to worry about the holiday traffic or driving halfway across town. Your route will all be on well-known, well-traveled, and well-lit locations.

Learn More

This event is not hosted by the LGS Foundation. This event was submitted to the LGS Foundation’s Calendar of Events by a community member.
To submit your LGS-related event, please complete the Submit an Event request form.

LGS: Standing Together. Stronger Together. – Monthly Support Group
2022-12-13 20:00 - 21:00 (America/New_York)
The Holidays! Making Merry in an LGS World- Is that even possible?
Now that Thanksgiving has passed, we jump into our holiday planning for Hanukkah, Christmas, & Kwanzaa but LGS is always looming, threatening to wreak havoc on the festivities.

Please join us as we share our stories (both joyful and agonizing), tips, gift ideas, fears (seizures, behaviors, ‘well-meaning’ family comments, etc.), and maybe even a secret family recipe.

All are welcome so if you don’t celebrate any of these festive occasions, you’re never excluded from this awesome caregiver group!

This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

LGS: Standing Together. Stronger Together. - Monthly Support Group
2023-01-10 20:00 - 21:00 (America/New_York)
The Power of Community
The holidays are over and January gloom is settling in.
Many of us are stuck at home without adequate support or contact with others. It’s a lonely time of year made more challenging by the complexities of caring for someone with LGS.
But the LGS Community is here, STRONGER THAN EVER! Let’s not face it alone. Consider attending our January support group! You can share, cry, vent, and yes, maybe even laugh.
Our families are Stronger Together because nobody should have to do this alone.
This monthly meetup is available to LGS families who are members of the LGS Foundation Online Family Community.
To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation
