Big Sister-Big Brother Meet and Greet

An informal gathering to introduce new families to their assigned “Big Brothers/Sisters.”

Orientation for New Families

This session is a “must” for families either new to the Aicardi organizations or new to the conferences! A brief conference history as well as information regarding the Aicardi Syndrome Foundation will be presented. Topics of discussion will focus on the natural apprehension and often overwhelming emotions that may come with attending your first conference.

Dreaming New Dreams

Reshaping your dreams, personal goals and career aspirations to fit into life with a disabled child sometimes feels impossible. This session is meant to empower families to dream new dreams, embrace and search out opportunities in your community and beyond to experience all life has to offer.

Age Focus Groups:

Parents are welcome to join any age group to share past experiences or plan for the future.

0-3 Newborns to Early Intervention

This interactive session will cover issues facing parents of children 0-3, from the first tumultuous year after diagnosis through preparation for preschool. Parents will discuss Early Intervention Services, financial planning and assistance, and IFSPs (Individual Family Service Plans). Open discussion and questions are encouraged.

4-7 Transitioning to School; Inclusion

This interactive session will cover issues facing parents of this early elementary age group as they transition out of Early Intervention into the Public School System. Topics will include continuing to navigate the medical system and IEPs as well as making friends within the community. Questions and open discussion are encouraged.

8-12 Little Kids in Big Bodies

This interactive session will cover many issues facing parents as our babies grow into bigger bodies. Topics will include: Mobility Issues, dealing with increasing height and weight, Diapers, Incontinence, and Puberty on the way. Questions and open discussion are encouraged.

13-17 High School to Adulthood

This interactive session will cover many issues facing the adolescent. Topics will include: gynecology and puberty issues; maintaining friendships with peers, guardianship options at age 18; high school issues and transition into adulthood. Questions and open discussion are encouraged.

18+ Transition to life after school

This interactive session will cover many issues facing the Aicardi Adult. Topics will include: Community Involvement and Life after school, such as day programs and housing options. Questions and open discussion are encouraged.

Orthopedic Issues

An orthopedic surgeon will discuss common orthopedic issues of and surgical options for the Aicardi child. Particular attention will be paid to hip surgery, spinal fusions, and ligament/tendon releases. Muscle tone will be discussed as well as strategies for dealing with high or low tone and surgical procedures to alleviate tone difficulties.

Wills, Trusts, Estate Planning

Attorney and Aicardi parent, Adam Gumson, will discuss and explain the issues surrounding these often confusing but necessary and important topics for families.

Families of the Phoenix Focus Group

This is a time for open discussion and support among Phoenix families. Phoenix Families are families whose Aicardi child has passed away.

IEPs (Individual Education Plans) and Advocacy

This session will help parents understand their role, rights, and responsibilities in the IEP process. Learn and share tips on how to effectively prepare for, participate in and follow-up on IEP meetings. Additionally, discuss strategies on how to be your child’s best advocate in all aspects of life.

Understanding Seizure Drugs

Pharmacist and Aicardi parent, Justin Tolman, will present information on many of the common anti-epileptic medications used to treat seizure disorders and their potential side effects.

Positive Behaviors from Home to School and Back Again

A discussion based on promoting positive behavior in all settings. This session will highlight prevention, teaching and reinforcement strategies to use at home, at school and in the community.

From Nutrition to Digestion and Onward

A Gastrointestinal expert will share healthy diet plans and clean-out regimes to promote wellness, keep the gut moving and combat constipation. The discussion will also focus on common digestive and intestinal problems and solutions for children with Aicardi Syndrome such as reflux, slow intestinal motility and constipation.

Music and Drama in the Childcare Rooms

Local artists and musicians will enchant the kids with a day filled with music and drama activities. Parents are welcome to join in the fun and watch and learn as the kids explore the power of music and theatrical arts.

Fundraising

What does it take to run the Aicardi Foundation? Learn more about the volunteer board and the allocation of funds to cover conference costs, research, and equipment scholarships. This interactive discussion will also focus on successful strategies for raising funds for the Aicardi Syndrome Foundation and increasing awareness in our local communities and the political arena.

Aicardi 101

Dr. Elliot Sherr, UCSF Neurologist and Researcher, will discuss common neurological issues and challenges associated with Aicardi syndrome. This session is geared for families with newly diagnosed children and for families that want a refresher on the syndrome and the medical history and terminology.

Stress Management

Parenting is a challenge under any circumstance but having a child with AS compounds everything! As parents manage the physical demands, emotional needs, and financial requirements of their AS child and well children, often times they are left feeling exhausted, frustrated, guilty and even angry. This discussion will focus on everyday coping skills for Aicardi parents.

Homeopathic and Naturopathic Alternatives

A naturopathic medical doctor will discuss the basis of homeopathy and possible remedies for: muscle tone issues, digestive and intestinal issues, seizures, immune system issues, etc.

Seizures

This presentation will include video footage of various types of seizures and a discussion regarding the characteristics used to classify seizure types such as: infantile spasm, absence, tonic-clonic, and partial (simple and complex).

Vision Therapy

A Vision Specialist will present therapeutic techniques and stimulation strategies to improve the child’s independence.

End of Life Issues

This session will help you find comfort in planning for the unthinkable while also discussing the grief that comes before and after a child passes away. Subjects will include DNR (do not resuscitate) orders, Hospice Services, pre-arranging funerals, sudden death vs. expected death. As always, any and all questions are welcome!

Siblings Speak Out

This is an opportunity to hear from our Aicardi siblings regarding their experiences of growing up with an Aicardi Sibling and growing into adulthood together.

Salivary Gland Ablation

An interventional radiologist, Dr Shiels, will discuss salivary gland ablation procedures. This procedure provides minimally invasive treatment for excessive salivation.  The gland is treated through a few needle sticks. Dr. Shiels uses ultrasound to help find the salivary glands and performs injections.  A drug solution formulated by Dr. Shiels is used to treat the salivary glands.  The procedure is completed by covering the injection sites with small band aids. 

Interactive Communication

An augmentative specialist will discuss communicating with your child through sign, switches, PECS (Picture Exchange Communication System), and other devices. This session will help you enable your child to make choices.

Mothers' Small Group Discussions

The room will be divided into various topics such as: Issues for the Working Mom, Doing it all as a Single Mom, Sibling Jealousy, Finding Time for Yourself, Dealing with Stares, Thoughts on Having More Children, Your Own Mental and Physical Health Needs, etc. The mothers are encouraged to hop from topic to topic or settle in, it’s up to the individual.

Fathers' Small Group Discussions

The room will be divided into various topics such as: Helping out at Home, Obtaining Necessary Equipment, Financial Resources for Healthcare Needs, Your Own Mental and Physical Health Needs, etc. The fathers are encouraged to hop from topic to topic or settle in; it’s up to the individual.

Grandparent Group Discussion

Open discussion among grandparents who share unique concerns not only for their grandchildren, but for their adult children as well.

Sibling Group Discussion

Open discussion among siblings of AS children pertaining to current issues and future concerns regarding themselves, disabled sibling, and their own families.

New Families Unite and Unwind

We invite all the new families (and the oldies too) to come together to discuss their first AS conference experience. This is also an opportunity to get to know one another better, answer questions, share thoughts and feedback regarding the conference.

Conference Expo

A time where families can browse and speak to vendors, therapists, and/or other Aicardi parents about products, resources by state and items that are useful and helpful in every day care for their AS child. We plan to have vendors, product fliers and as much information as possible on the best and newest products and therapies! If you would like to be part of the Expo, please contact Jen or Carrie at