Tyler Foundation

11/06/2020

Remember as you shop online to use Amazon Smile and make a difference this holiday season (and all year round!). Shop for gifts at smile.amazon.com/ch/20-4106228 to generate donations for Tyler Foundation!

05/05/2020

is a global day of giving and unity that will take place on May 5, 2020 as an emergency response to the unprecedented need caused by COVID-19.

The Tyler Foundation continues to help even more families during this challenging time. Please consider supporting the Tyler Foundation during this Global Day of Giving.

Donate online: https://www.tylerfoundation.org/donate

04/16/2020

Over the years we have been so thankful for all your generous donations and support. Today, the Tyler Foundation continues fielding requests for urgent financial support for parents of kids with epilepsy. At the same time, these parents are really being hit hard due to layoffs from Covid-19. We are proud to be saying "YES" to these requests and directly helping those most in need.

So again, thank you for your support and allowing us to be able to help those in need right now.

03/06/2020

We have had a lot of inquires the past week about Cakes & Comedy. We are changing things up a bit, moving the date, and hope you all like to dress up and have some Halloween fun to benefit the Tyler Foundation and help kids with epilepsy!

Please save the date!! We hope you all will join us for this fun night of Costumes & Cocktails for a Cause!

12/16/2019

This makes my heart so happy!! These kiddos and their families (plus some donations from those who couldn’t join us today) helped us fill 21 totes to give to Boston Childrens Hospital epilepsy team to give to children that need a little cheering up!

11/13/2019

Epilepsy Awareness Month, Fact #5: This is a tough fact to follow and may be difficult for many in our community to read. But it's important for us to educate others so that there is not a delay to a surgical evaluation and, at the same time, our journeys will hopefully provide a catalyst for development of new treatments as urgently as possible.

Why do we care if seizures are drug-resistant? After all, once the seizure stops, there's nothing to really worry about, right?

Wrong.

Drug-resistant seizures can have catastrophic consequences, especially in childhood. And most especially in infancy. A child can have regression or loss of motor function, speech, or other developmental milestones. They may stop eating. They might develop characteristics of autism.

Most frightening are the chances of dying due to sudden unexplained death due to epilepsy (known as SUDEP), which is as high as 1 in 150 in those with drug-resistant seizures.

Learn about the consequences of drug-resistant seizures in childhood on our website here: http://bit.ly/2PD6XJ3

What have been the consequences of drug-resistant seizures for your child? Share your story.

11/07/2019

Epilepsy Awareness Month, Fact #4: Approximately 45,000 children are diagnosed with epilepsy each year. That's more than childhood cancer and juvenile diabetes, combined.

The chances of stopping seizures with medications goes down dramatically with each medication added: Approximately 47% of children will be seizure free after trying one anti-epileptic drug; 13% after trying the second drug; and only 4% after trying a third drug, whether alone or in combination with the two other drugs. The remaining 36% of children are drug-resistant.

This means that in the United States alone, of the approximately 45,000 children in the United States who are diagnosed with epilepsy each year, roughly 16,200 are drug-resistant.

So when is epilepsy considered drug-resistant? After failure of TWO appropriate and tolerated anti-epileptic drugs.

How many anti-epileptic drugs has your child failed? Share your story.

Learn about drug resistance at http://bit.ly/2qsoKIh

11/06/2019

Epilepsy Awareness Month Fact #3: Infantile spasms are a type of generalized seizure which typically begin in infancy. The spasms usually involve brief symmetrical contractions of the muscles of the neck, trunk, arms, and legs. In many cases, this behavior is accompanied by a rapid and forceful drop of the head, although in some children these movements can be very subtle. It’s important to note that there can be many variations of this pattern.

After individual spasms, children often cry. Although a single spasms may last only a few seconds, infantile spasms typically occur in clusters which may last several minutes. They have a distinct EEG pattern and are accompanied by developmental delay or halt in developmental progress. Clusters of spasms most often occur upon awakening, but can happen at any time of day.

The name infantile spasms can be misleading. Infantile spasms can be catastrophic to development. Developmental outcomes are poor in a majority of children with infantile spasms. Most children with infantile spasms will also have intellectual disability. Approximately 30% of children with infantile spasms will develop autism spectrum disorders. One survey found that 40% of children with autism had cerebral palsy and 15% died before the age of eleven years.

Infantile spasms are often misdiagnosed as colic, reflux, normal baby movements, or “overly concerned mother”.

It is imperative that a child is diagnosed early and quickly so that effective therapy can begin as soon as possible. This may positively impact outcomes. Currently, adrenocorticotropic hormone (ACTH) and vigabatrin (also known as Sabril) are first-line therapies available in the United States; however, these therapies are not effective in all cases. High dose prednisone may also be effective for some children.

As part of our membership in the Infantile Spasms Action Network, we'll share more about infantile spasms during Infantile Spasms Awareness Week December 1 - 7.

Were your child's infantile spasms misdiagnosed? Share your journey.

11/04/2019

11/03/2019

Epilepsy Awareness Month, Fact #2:

No, you don't put a spoon in a person's mouth when they're having a seizure. This is an urban myth we must dispel asap! If you see a child who is having a seizure, there are several things you should do: first, and most importantly, stay calm.

Time the length of the seizure and be sure to stay until it is over. Move objects out of the way to prevent injury. This is even true with focal seizures, as the child may be disoriented and attempt to walk or run away.

Be sure the child is as comfortable as possible and keep onlookers away. Do not hold the child down. Monitor the child’s breathing and never put anything in the child’s mouth. Wait until the child is fully alert to give water, food, or medications.

If you have a child with epilepsy, ask your neurologist when you should call 911 or give emergency medication, as it may be in less time depending on the nature of your child’s seizures.

What do you do when your child is having a seizure? Share your story.

11/01/2019

Let's kickoff Epilepsy Awareness Month with our first fact! Fact #1: A seizure is a short occurrence of signs or symptoms due to abnormal, excessive, or synchronous neuronal activity in the brain. A seizure can affect any part of the body. They can be as simple as a feeling of deja vu, a stomach ache, dizziness, or include bodily movements and sometimes - but not always - loss of consciousness or awareness.

Do you know a child who had a type of seizure that had an unusual presentation or did not involve a loss of consciousness? Share your story.

09/29/2019