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Federal Update

Update: September 20, 2011

Bill H230

Cristy Balcells, former Executive Director of MitoAction, testified before the Massachusetts legislature for the support of Bill H320, an act providing treatment of and care for patients with mitochondrial disease. 

Click Here to read a copy of Cristy's letter of support, which she will submit along with documentation from all of the physicians on MitoAction's medical advisory committee and a petition signed by 420 families. 

Check back here for more updates on Bill H320!

 

 

 

Watch more speakers from the Legislative Awareness Event

The national PKU alliance, Society for Inherited Metabolic Disorders, and other organizations have been working with Senator Kerry to introduce legislation that would federally mandate coverage of medical foods and supplements for inborn errors of metabolism.

Here is an example of the policy statement from the SIMD

Right now, the legislation is being written in Senator Kerry's office and is likely to be introduced very soon!

Please, act now to ensure that mitochondrial disorders and the supplements used by mitochondrial disease patients are included!girl

You can advocate in two ways that take just a few minutes. 

1. Sign the petition in support of this bill

2. Write an email directly to Senator Kerry

Click here for a sample letter that you could send

It is my understanding after speaking with physicians and leaders at the NIH and other organizations that your stories and letters DO make a difference, but time is of the essence!

Thanks for your support!

Direct your questions to MaryBeth (Mito411@mitoaction.org).