Supporting Rare Epilepsy VIP Siblings
Kits for Families
The VIP Sibling Collaboration Team has developed three special kits just for rare epilepsy families based on research, expertise, and lots of community input, including from VIP siblings. Check out the kits that interest you below and order them by mail or use the Tools & Resources tab to download today.
Parents & Caregivers Kit
The Parents & Caregivers Kit was created based on research, guidance, and inspiration from patient organizations in the rare epilepsy community and from HCP and mental health experts specializing in rare seizure disorders. We hope it can offer support and resources for families who are impacted by rare epilepsies. Here’s a peek at what’s included in this kit-by-mail.
- Guide
- Love Notes
- My Family Is Living with a Rare Epilepsy Form (available for download only at Tools & Resources)
- VIP Sibling Seizure Plan Form (available for download only at Tools & Resources)
Siblings 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 having different emotions is okay and helps celebrate how important and loved they are. Here’s a peek at what’s included in this kit-by-mail.
- My Sibling Is Special Book
- Coloring Journal
Family Journal
- Mood Stickers
- Rockin’ it / Rough Day Wristband
- Plush Star
Siblings Ages 11-18
Your 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’s a peek at what’s included in this kit-by-mail.
- Sibling Journal
Family Journal
- Rockin’ it / Rough Day Wristband
- Door hanger
Order Your Kit
At UCB people are at the heart of all we do. This means considering the impacts of rare epilepsy beyond the person living with the disease but also those who care for them and their families. This is why we collaborated with dedicated patient organizations to make the VIP Sibling Project possible.
While the electronically available materials are freely accessible on this site (visit Tools & Resources section), we hope you’ll understand that the kits available by mail have limited quantities. Select your rare epilepsy community below. If your rare epilepsy community patient organization is not an authorized distributor or your community does not have an officially formed patient organization, please reach out to DEE-P (Developmental Epileptic Encephalopathy-Project) Connections. This organization aims to break through the isolation to facilitate connections and share critical resources with rare epilepsy families facing similar challenges.
- Select a Patient Organization
Doose Syndrome Epilepsy Alliance (DSEA)
DSEA is a 501(c)(3) that exists to provide community and support for children and families living with myoclonic-atonic epilepsy. We work to spread awareness about Doose Syndrome and advocate for improved treatments.
Dravet Syndrome Foundation
The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
Dup15q Alliance
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Through our work we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for those affected by Dup15q Syndrome.
International Foundation for CDKL5 Research
The International Foundation for CDKL5 Research (IFCR) is on a mission to treat and cure CDKL5 Deficiency Disorder by funding scientific research while helping affected individuals and their families to thrive. We strive to raise awareness of this rare disorder within the medical and lay communities. Above all, we seek to support all CDKL5 families and caregivers, whether newly diagnosed or well into adulthood, by providing the most current information on treatment advances and how to live their best life possible. We have established CDKL5 Centers of Excellence at major health systems across the United States.
International SCN8A Alliance
The International SCN8A Alliance, recently founded by Wishes for Elliott and the Shay Emma Hammer Research Foundation, is dedicated to supporting collaborations to accelerate better treatments and improved outcomes for all those living with SCN8A epilepsy. We provide education and support for SCN8A families through regional family networks, variant groups, and a network for newly diagnosed families. We advance the scientific understanding of SCN8A through building partnerships through a Research Consortium, Clinician Network, and project to develop the first SCN8A Standard of Care.
KCNT1 Epilepsy Foundation
We are dedicated to accelerating the discovery of a disease-modifying treatment for our KCNT1 Epilepsy warriors! The Foundation is working to identify and connect families affected by KCNT1-related epilepsies, provide patient perspectives to physicians, researchers, and pharmaceutical industry professionals from all over the world and support preclinical and clinical efforts to develop a cure. These scientists are doing amazing work: hope is truly on the horizon!
LGS Foundation
The mission of the LGS Foundation is to improve the lives of those impacted by LGS through research, family support programs, and education.
PCDH19 Alliance
Our mission is to improve the lives of children and families affected by PCDH19 Epilepsy. The PCDH19 Alliance focuses on raising and directing funds to scientific research with the goal of finding better, more effective treatments and, ultimately, a cure. We’re also here to provide information and support to affected families, assist research efforts and ensure that no family suffers without a diagnosis & the best medical treatment.
SLC6A1 Connect
SLC6A1 Connect is a patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1. Our focus is to raise awareness and funding to advance scientific research that will ultimately result in a cure.
Contact
- Amber Freed, Founder and CEO
afreed@slc6a1connect.org - Kim Fry - VP
kfry@slc6a1connect.org
STXBP1 Foundation
The STXBP1 Foundation is dedicated to finding a cure for STXBP1-Related Disorders while improving the lives of our patients and families. Founded in 2017, STXBP1 Foundation is a parent-led advocacy organization. Our organization's work focuses on funding and driving research on STXBP1-related disorders; creating awareness; as well as educating, supporting and improving the lives of our families.
SynGAP Research Fund
SynGAP Research Fund (SRF) is a global group of families committed to accelerating the science to cure SynGAP & to supporting each other. Our mission is to support the research and development of treatments, therapies and support systems for SynGAP1 patients worldwide.
TSC Alliance
The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC. We drive research, improve quality care and access and advocate for all affected by the disease. The TSC community is our strongest ally. The collaboration of individuals and families, along with the partnership of other organizations, fuels our work to ensure people navigating TSC have support—and hope—every step of the way.