Foundation Outreach

Goal 1.

To increase the research that is being done to treat and cure epilepsy.

Program: The “Dr. Alfonsina Q. Davies Endowed Chair for Research in Epilepsy in Honor of Paul Crandall, M.D.”

The Chair was established at the University of California, Los Angeles, in the contract amount of $2,000,000. Donations have been made in the amount of approximately $960,000. It is the only Academic Chair at UCLA for this purpose. The University has appointed Dr. Gary Mathern to this position effective April 2014. The January, 2015 Newsletter has an article. Dr. Mathern is a highly respected researcher, a co-editor of Epilepsia, and a world renowned pediatric epilepsy surgeon. We are delighted with his selection.

Donations to UCLA can be made by pressing the button below. The $2,000,000 will be invested by the UCLA Foundation and revenues from the investments will be used to support the research program. The body of the donation will not be used, and in fact will be enhanced by cost of living increases so that the program will have a consistent buying power and will not be depleted.

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Goal 2.

To establish the “Dr. Nina Davies Epilepsy Treatment Center” at a major university medical center.

Current practice in epilepsy treatment is to focus on the disorder and treat it through medication, implant or surgery. As a note, not all epilepsy patients can have their seizure disorder significantly suppressed or eliminated.

Epilepsy is not like having a treatable illness that is gone in days or months. It is, in most cases, a lifelong disease or incapacity. It has impact on the patient and all of those in the immediate and extended families. For children who develop epilepsy in the formative years there appears to be a developmental loss. They do not understand why things are happening to them or why they are treated differently than other children. This creates a lifelong struggle to appear normal. This usually happens in early childhood up to eight years old.

For those who develop it in later life, the impact is also difficult, although they have been able to experience some normalcy in life. They may be married with children, have been able to develop social contacts, have worked a number of years and now they have to adapt to a new situation, painful as it may be, which they can understand and handle as mature individuals.

The center we envision will be staffed with counselors, social workers, psychologists and psychiatrists who have specialized in the treatment of those with epilepsy. Not only will the patient be medically treated, but the humanistic side of the individual will be treated so that the impact of the illness can be mitigated and understood. It is important to note that the psychosocial trauma that people with seizures suffer is almost as bad as the seizures themselves.

Our Nina was treated for her seizures all her life, but we were never able to find someone that understood or could treat her for the emotional distress that she lived with everyday, fearing a seizure in public and the consequences it would bring. She lost her position as an Assistant Superintendent of a major Southern California School District because she had three seizures over a period of three years. This caused our daughter to fall into a deep depression that lasted many months and we had to take her out of state to get another job.
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Goal 3.

To create empathy in the general public forthose with epilepsy.

Most public epilepsy related programs have as a goal “understanding” or “outreach” in relation to informing the general public about epilepsy and its consequences. We chose the word empathy since we believe that it more fully describes the needs of the epilepsy community.

We chose this definition of EMPATHY over others because it expresses what we wish to accomplish.

“Empathy is the experience of understanding another person’s condition from their perspective. You place yourself in their shoes and feel what they are feeling. Empathy is known to increase prosocial (helping) behaviors. While American culture might be socializing people into becoming more individualistic rather than empathic, research has uncovered the existence of “mirror neurons,” which react to emotions expressed by others and then reproduce them.” (Psychology Today)

For us, understanding is not enough. We would like to help people “walk in the shoes” of someone with epilepsy.

Program.

We have a multi pronged approach to this, since it involves reaching large numbers of individuals to help them think differently about those with epilepsy as individuals and about the disorder.

Public Advertising -We plan on some public advertising about the disorder and our foundation. This might come in the nature of billboards, radio and television.

Social Media –There is also the social media such as Facebook, Twitter, LinkedIn, and the like.

Conferences, public activities – There are also face to face activities to consider, such as non-epilepsy related conferences and meetings, public epilepsy related activities such as walks, runs, and so on.

We have developed materials that would allow us to attend conferences as vendors. We have limited resources for this, but we are also a young organization.