KCNQ2 Cure runs two KCNQ2 parent support groups. If you are a parent, or primary caregiver of a child who has been diagnosed with KCNQ2 encephalopathy, and you would like to communicate with other families around the globe, there are two online support group options. The families in the support groups recognize the immeasurable value of communicating and sharing experiences. By sharing our stories, we pass on information relating to the diagnosis, treatments, medications and research. The families in the group provide comfort, support, strength and love when you need them most. Please send one of our Admin’s a friend request so we can add you to the group.
Facebook KCNQ2 Encephalopathy Support Group
Facebook KCNQ2 Benign Familial Support Group
Parent Connect Program
Provides support to our families during difficult situations that require emotional support. We hope to decrease family stress and feelings of isolation by providing these services to our families. This confidential service is available to any KCNQ2 Cure Alliance family.
- Has your child been recently diagnosed with KCNQ2 EIEE7?
- Are you going through a challenging time in your child’s life, such as the increase in seizures, difficult new behaviors or problems with finding resources or therapy?
- Would you like to talk to another parent of a child with KCNQ2 and possibly the same sequence variant?
What if you could get connected with a mentor who not only understood your child’s diagnosis, but also had experience raising a child with KCNQ2? Would you like to be in touch with someone who was willing to listen to your grief, fears, hopes, and questions, and share their experience with you?
Parents can click on the appropriate button below and an intake form will be emailed to you that will help find an appropriate match in our database of mentors. The mentors are parents of a child with KCNQ2 EIEE7, who volunteer their time to offer support and assistance in navigating resources. The mentors know what it’s like to feel isolated and distraught during tough times, and they are here to help! All requests and information shared is kept confidential.
Once a potential connection has been identified, the family can expect a phone call or email from a mentor parent. Our main goal is to provide a support and direction to the family in need, and we will do our best to meet that goal.
If you are interested in participating in this program, either as a mentor or as a family seeking a connection, or have further questions about the program, please us below.
Where to find us