DestinyMaker is following two important projects. I have been asked to help raise awareness about each.

One being undertaken by the Epilepsy Foundation.

“The Epilepsy Foundation is leading the fight to increase funding for research and programs, stop discrimination and improve access to care.

In 2009, a new President, 535 members of Congress and nearly 10,000 state legislators will take office. By signing our petition, you can help us persuade them to support policies that improve the lives of the three million American families affected by epilepsy.

More than 3 million Americans have epilepsy (seizures) and 200,000 new cases are diagnosed yearly. For most, there is no cure and many with epilepsy face discrimination and difficulty accessing care.

I strongly urge policymakers to support efforts that end discrimination, improve access to care programs, and increase funding for epilepsy research and programs.”

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FAQ’s

Q: Why are we collecting signatures?
A: To raise awareness and show policymakers that we need greater funding for research and programs, greater access to quality medical care and an end to discrimination at work and in schools.

Q: How many signatures are we trying to collect?
A: Our goal is to collect 100,000 signatures from across the country. Even if we do not reach this goal, we will make a strong impact by showing that tens of thousands of people support epilepsy. All signed petitions must be received no later than December 31, 2008.

Q: What will happen to the signed petitions?
A: They will be delivered to leaders in Washington, DC in early 2009. They may also be delivered to elected officials in your state.

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Epilepsy Facts:

• Epilepsy is a neurological disorder that affects more than 3 million Americans.

• Approximately 200,000 new cases of seizures and epilepsy occur each year.

• Ten percent of the American population will experience a seizure in their lifetime.

• Epilepsy can affect anyone, at any age, at any time. Epilepsy is not a disease, a form of mental illness, or a sign of low intelligence. It is not contagious.

I urge all my friends to visit www.destinymaker.org and sign the petition. Tell a friend.

Also Epilepsy Phenome/Genome Project

Welcome to the EPGP! We’re a group of researchers, physicians, coordinators, family members, people with epilepsy, advocates, and friends working together unlock the mysteries of epilepsy.

EPGP is the first and largest research study of its kind to understand what causes epilepsy, why people respond differently to medications, and why some families have several people with seizures. The National Institutes of Health is partnering with leading epilepsy professionals, advocacy groups, and families across the U.S. for this 5 year study.

The goal of EPGP is to collect, anonymously, a blood sample and detailed clinical information on people with specific types of epilepsy, in order to improve the diagnosis and treatment of epilepsy for many people living with seizures.

The study is looking for participants who:
1) Have epilepsy and also have a brother or sister with epilepsy
OR
2) Have seizures due to Lennox-Gastaut Syndrome, Infantile Spasms, Polymicrogyria, or Periventricular Heterotopia. (No sibling required, but both parents must also agree to participate.)

Even if you do not qualify to participate, you can help by telling other people in the epilepsy community about this important project. In particulalr, please keep an eye out for siblings with epilepsy and ask them to contact us.

This study has the potential to change to future of epilepsy care for everyone, so please join us in the cause!

More information at:
www.epgp.org
888-279-EPGP

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