Get Your VIP Caregiver & Sibling Kits Today
First, we listened!
It can be hard for brothers and sisters when a sibling has a chronic illness like LGS. This has disrupted their routines, and they worry and wonder what is happening and if their sibling will be alright. Often, the complex needs of the child with LGS limit parents’ time, leaving siblings feeling unimportant or neglected. This can be upsetting and frustrating for everyone involved. For LGS siblings, their whole childhood takes a slightly different turn from most of their peers. It is important that they have the opportunities and tools they need to understand and cope with the situation.
Many members of our community, including parents and siblings (ages 9 and up), participated in a research study called the Sibling Voices Survey. Researchers presented findings from the study at the 2019 LGSF Conference in Seattle, WA.
Read the Survey: Sibling Voices Survey
Then, we acted!
Now, thanks to continued collaboration with UCB and more than 10 rare epilepsy advocacy groups, we are now able to provide the below important new resources to support siblings and their families.
“The VIP sibling kits came today, and I just wanted to let you know that they are amazing!!! Thank you so much! My boys are really excited about them. Now my girls (both my girls have LGS) want journals so they can doodle too. Thanks again!” – LGS Mom
Caregiver & Sibling VIP Kits
Parent & Caregiver Kit
The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community and from Health Care providers and mental health experts specializing in rare seizure disorders. We hope it can offer support and resources for families impacted by rare epilepsies. Here’s a peek at what this kit-by-mail includes.
- Guide
- Love Notes
- My Family is Living with a Rare Epilepsy (available for download only)
- VIP Sibling Seizure Plan (available for download only)
VIP Sibling Kit (ages 4-10)
Learning about a rare epilepsy isn’t easy for younger siblings. When their brother or sister has a seizure or other emergency, they may feel a little scared or worried. This special VIP Sibling Kit was created to assure them that having different emotions is okay and helps celebrate how important and loved they are. Here’s a peek at what this kit-by-mail includes.
- My Sibling is Special Book
- Coloring Journal
- Mood Stickers
- Rockin’ It/Rough Day Wristband
- Plush Star
VIP Sibling Kit (ages 11-18)
Older VIP siblings may feel like nobody else their age has to cope with the kinds of challenges they do having a brother or sister with a rare epilepsy. Designed to reassure your VIP sibling that their thoughts and feelings are normal, this special VIP Sibling Kit also provides encouragement and insight from other rare epilepsy siblings. Here is a peek at what this kit-by-mail includes.
- Journal
- Rockin’ It/Rough Day Wristband
- Door Hanger
REQUEST A VIP KIT by mail
Download a VIP Kit – English
Download a VIP Kit – Spanish
Sibling Spotlight
Browse our LGS Sibling Spotlights by visiting our Personal Stories Page.
The LGS Foundation endeavors to shine the spotlight on our siblings and who they are, recognizing each sibling’s unique contribution to the world. Click here to share your story and be a part of our sibling spotlights.
Additional Resources for Siblings
- Sibling Support Project – Founded in 1990, the Sibling Support Project is the first national program dedicated to recognizing, promoting and addressing the life-long and ever-changing concerns of millions of siblings of people with developmental, health, and mental health concerns.
- UCB Family Epilepsy Scholarship Program – The program offers educational scholarships to people living with epilepsy, family members, and caregivers to help them fulfill their dreams.
VIP Sibling Kits are made available to families at no charge, thanks to support by our partners at: 
The information here is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. The content provided is for informational purposes only. LGSF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health-related diagnosis or treatment options.
Updated 11/13/24 (KK)