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Neurosciences Support Groups

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If your child is affected by a neural condition, we know things can get a bit complicated for your whole family. There are many challenges, and even fears, to face. But there are also answers from people who truly know what you're going through. And you'll find them here at Cook Children's.

We offer a variety of support groups that are open to families of our patients and also those families in our community whose children have neurological diagnoses. Educators and other caregivers are welcome here as well. It's good to know that when things get complicated, the support teams at Cook Children's are here to help.

Cleft and Craniofacial support group

Cook Children's is proud to launch our Cleft and Craniofacial support group. This group is designed to support parents of our Cleft and Craniofacial program. This is your group and we want your input on the topics, guest speakers and information you'd like to have. So come share your ideas and enjoy some cookies, snacks and fellowship.

2019 meeting dates:

  • December 12 – combined Neuro support groups: holiday party

For more information or questions contact Vicki.Kelley@cookchildrens.org

Parking for parents of patients is free.

Handicap access to the medical center is available from the first and third floor parking garage.

Medical Center parking directions

D4AYA program

D4AYA is a support group for teens living with neurological or rheumatological chronic conditions. In addition to living with a neuro or rheum diagnosis, participants in D4AYA will be:

  • Between the ages of 13 and 20
  • Developmentally a teen
  • Able to communicate with friends (verbally or augmented)
  • Able to both give and receive support

Activities will include guest speakers, creative arts, transitional education, and processing through games and small group discussions.

To register or for more information, contact Erin Reid, BS, CCLS, at 682-885-7763 or Erin.Reid@cookchildrens.org.

2019 meeting dates:

  • June 6
  • August 22
  • October 24
  • December 12 – combined Neuro support groups: holiday party

The group will meet in the Pavilion classrooms of the main building from 6-8 pm. These meeting will be drop-off meetings, just for the teens. A light dinner will be provided.

Epilepsy support group

Cook Children's Epilepsy support groups offer patients, parents, family members, and care-givers the knowledge and skills needed to help cope with epilepsy.

Our support groups help families:

  • Meet others with similar experiences.
  • Build a network of supportive relationships.
  • Develop new skills to help you deal with daily challenges.
  • Receive hope and encouragement.

2019 support group meeting dates:

  • January 10
  • March 14 – combined Neuro support groups: Family Art Project
  • May 9
  • July 11
  • August 8 – combined Neuro support groups: Back to School Bash
  • November 14
  • December 12 – combined Neuro support groups: holiday party

Support group for parents of children with epilepsy

Each meeting begins with a specific topic presented by a professional with experience in caring for children with seizures. Following the speaker's presentation, there is time for open discussion so families can share their stories. Child care is provided for siblings and children under the age of six. There is no cost to participate. Dinner is provided at no charge. Support group meetings are held in the Pavilion classrooms.

If you are interested in participating or would like more information, please call: 682-885-7259

Parking for parents of patients is free. Parking for other family members and visitors is $1 per hour.

Handicap access to the medical center is available from the first and third floor parking garage.

Medical Center parking directions

Neurofibromatosis support group

The Neurofibromatosis (NF) Family Support Group is designed for patients (ages 0-18), their parents or caregivers, as well as siblings of all ages to attend.

Cook Children's hosts family support activities during the year. Support group meetings at the medical center include dinner, and sitters are available for children under the age of 5. Families will also have an opportunity to visit with one another and share resources with each other.

2019 support group meeting dates:

  • March 14 – combined Neuro support groups: Family Art Project
  • August 8 – combined Neuro support groups: Back to School Bash
  • December 12 – combined Neuro support groups: holiday party

Address

Cook Children's Medical Center
801 Seventh Avenue
Fort Worth, Texas 76104
682-885-4000

Parking for parents of patients is free. Parking for other family members and visitors is $1 per hour.

Handicap access to the medical center is available from the first and third floor parking garage.

Medical Center parking directions

Facts about NF

  • NF involves the uncontrolled growth of tumors along the nerves anywhere in the body, internal and external
  • NF can occur at any time throughout an individual's life
  • NF is the most common neurological disorder caused by a single gene
  • Every hour 3 people are born with NF
  • NF affects 1 out of every 3,000 people worldwide
  • NF equally affects people of all gender, races and ethnic origins
  • 50% of those with NF will inherit the disorder from a parent and approximately 50% will have no family history of NF
  • Individuals with NF have a 50% chance of passing the disorder to his or her child
  • Currently there is no cure, long-term treatments or any preventions for NF

Educational resources

Parents as Partners

Cook Children's is working to include parents more than ever before and to offer a variety of programs to help us better understand the patient and family experience. Cook Children's offers several opportunities for parents to get involved, including:

  • Family feedback groups: Participants are asked about their experiences and invited to share recommendations for improvement.
  • Family Advisory Council: A select group of Cook Children's patient parents and staff meet monthly to review policies, initiate change and provide general feedback.
  • Parent mentoring: One-on-one support and encouragement are provided to newly diagnosed families or families with similar conditions or problems.

For more information about Parents as Partners, to find a mentor, or get involved as an active participant, please call 682-885-6181, or email our neurology team.

Sib2Sib™ program

Cook Children's Sib2Sib program offers a variety of supportive activities for siblings of children living with a chronic illness or a life changing injury. Programs include the following:

  • Camp Courage day camp and Camp Courage Teen overnight camp
    These are fun-filled adventures away from the medical center. They provide opportunities for growth and building relationships with other siblings.
  • Teen and young adult field trips
  • Sibshops – The history of Sibshops spans more than 25 years. Founded by Don Meyer, a pioneer in the sibling movement, the Sibshop model is dedicated to the life-long concerns of brothers and sisters of people with special health, developmental, and mental health concerns. There are currently over 320 Sibshops worldwide, including one right here at Cook Children's in Fort Worth, Texas. To learn more about the history of Sibshops and what they offer check out siblingsupport.org.

Your child can join the Cook Children's Sibshop for opportunities to meet other siblings, discuss common concerns unique to siblings of children with a chronic illness or life-changing disability, play games, enjoy arts and crafts, and have fun. It's a chance for us to celebrate siblings for who they are and all they do.

To learn more about the program or to register for the mailing list, call 682-885-5872, speak to your child's Child Life specialist or you can email sibprogram@cookchildrens.org.

Stroke Support Group

This group offers support and events for families and caregivers of children that have suffered from a stroke.

The group meets quarterly.

Please contact Gabriela Duran at 682.885.1311 for additional information on our events and support group programs. You can also email gabriela.duran@cookchildrens.org.

Tourette's support group

Cook Children's Tourette's support group is available for patients, parents, caregivers and brothers and sisters living with Tourette's.

2019 meeting dates:

  • March 14 – combined Neuro support groups: Family Art Project
  • August 8 – combined Neuro support groups: Back to School Bash
  • December 12 – combined Neuro support groups: holiday party

If you are interested in participating or would like more information, please contact:

Erin Reid, BS, CCLS
682-885-7763

Parking for parents of patients is free. Parking for other family members and visitors is $1 per hour.

Handicap access to the medical center is available from the first and third floor parking garage.

Medical Center parking directions

We're here to help.

If your child has been diagnosed, you probably have lots of questions. We can help. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-2500.