Wednesday, May 26, 2010

Epilepsy Action Alert -California Readers!!!

One of the hats I wear is board member of the Epilepsy Foundation of Greater Los Angeles. This past year, several of our board members have been aggressively pushing for special legislation in the California state legislature that affects tens of thousands of children with epilepsy in southern California. We are collectively urging the Senate Appropriations Committee to support Senate Bill 1051 - Emergency Medical Assistance - administration of Diastat bill. This bill will help make sure children in California with epilepsy who may have life-threatening cluster seizures or status epilepticus will get the emergency medication they need in a timely and safe manner while in school. Members need to know that a child's need for Diastat can be a life and death matter and not a financial decision. The Epilepsy Foundation affiliates in California endorse and strongly support Senate Bill 1051.

This is a no-brainer, currently stymied by powerful special interests, lobbies and unions. It's non-partisan, the type of legislation that could have enormous positive impact on the lives of children with epilepsy that require the emergency use of Diastat (my Sophie being one of those children!). You can read about the politics of the issue in an excellent article by Steve Lopez in the Los Angeles Times, today by clicking HERE. Steve Lopez is the writer who brought our attention to the problems on Skid Row here in Los Angeles; he is nationally recognized as the writer of the book The Soloist which was made into a movie of the same name starring Robert Downey, Jr. He is an excellent writer and a journalist who relentlessly comes down on inequalities no matter the political party. This is good reading, even if you don't live in California!

If you live in California, you can help get this legislation pass by contacting members of the committee ASAP and

  1. Identify yourself as a resident of CA
  2. Ask him or her to please support SB 1051 so that if a child with epilepsy has life-threatening clusters of seizures, that child will be able to get their needed medication without delay.
  3. If you have a child that uses Diastat, please share your personal story of why this protection is needed.
  4. If you, or a loved one has epilepsy, please let the Senator know how important it is that people with epilepsy have access to their medication.
  5. Let them know that this bill will actually save money by avoiding unnecessary costs of an ambulance, emergency room, medical tests, etc. as well as the untold expenses of a child's suffering and potential safety.


• Christine Kehoe (Chair) 916-651-4039 (San Diego)
• Elaine Alquist - 916-651-4013 (Santa Clara)
• Ellen Corbett - 916-651-4010 (San Leandro)
• Mark Leno - 916-651-4003 (San Francisco)
• Curren Price - 916-651-4026 (Los Angeles)
• Lois Wolk - 916-651-4005 (Linden)
• Leland Yee - 916-651-4008 (San Fran / San Mateo)
• Senate Pro Steinberg at 916-651-4006

With your help, this bill has already passed the Senate Education and Health Committees. We now need your support to get through the Appropriations Committee and to the full Senate. Please call today!


  1. You never cease to amaze me.
    I sure hope this happens.

  2. i want this for you.
    for sophie.
    for everyone.

  3. I have called (me who hates phones) everyone I know in California and asked them to support this. My daughter in love works with many people who are all for it so we shall see what comes out of this. If just wishing with all of my heart could be enough, this shall pass.



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