Stand with Daphne – Help fight mitochondrial disease

One in 2,000 Californians is currently living with a Mitochondrial Disease, a disease that impairs energy production by the cell's powerhouse, the Mitochondria. Our 2-year-old daughter Daphne is one of the afflicted. She was diagnosed with Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate (LTBL) shortly after her first birthday. She's sweet, spicy and stubborn, and deals with her disease every day.

There are many variants of Mitochondrial Disease, which present with a wide range of symptoms and severity, but they all have one thing in common: there is currently no cure.

There are, however, drug therapies which can greatly improve quality of life. A Mito Cocktail of vitamins and supplements can make a world of difference to Mito patients, turning bad days to good by maximizing the function of the Mitochondria.

Health Insurance companies are not required to cover these therapies in California. The drugs are relatively inexpensive and readily available, so there is no financial incentive for pharamaceutical companies to produce the drugs, study their effects, or compel insurance companies to pay for them.  The burden is shifted to the Mito patients and their families, at a cost of approximately $500-$1,000 per month. Earlier this year, Kentucky led the way and began requiring insurance companies to cover these treatments.

We are petitioning the State of California to require health insurance companies to cover the cost of the Mito Cocktail.  This provision makes financial sense, because by employing these readily available daily therapies, expensive treatments down the road may be minimized or avoided.  But it also makes moral sense.  These debilitating diseases affect life at its most basic level.  There is simply no justification for denying relief to those afflicted.

If you are interested in helping further to get this bill sponsored and passed contact desiree@daphneslamp.com

Update #36 years ago
I had a call today with a CA Senator and he wants to know what sort of "coalition" I am going to form to fight this bill through the Legislative Process. I first said ME! I called all 120 offices, I can do this, but I know I need more. There are over 17,000 Californians who have signed this petition. I need you! I need you now! Please email me desiree@daphneslamp.com and follow the CA Mito Bill and Daphne's Lamp Facebook Pages (www.facebook.com/CAMitoBill/ and www.facebook.com/daphneslamp).
Update #26 years ago
Hi everyone! Thank you all so much for signing, the California signatures have really grown. We are experiencing some issues getting a legislator to commit. The next step would be to email and call them and with over 11,000 California signatures I bet that covers just about every district. I can get the email format together and the spiel for a quick call and who to ask for but we are really up against the clock as the session starts January 3rd and the bill has to be in by Feb 16!
Update #16 years ago
You all are amazing, I am blown away by the support in such a short time. Let's keep this momentum going. California has to introduce the bill by February or we miss an entire year! Sign and Share!!
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