California friends, we need your help!!!April 03, 2009 by Bill Strong Families of SMA (FSMA) is working with California Stem Cell, Inc. (CSC) to secure federal funding for a clinical trial aimed at identifying a cure for SMA via cell replacement therapy. They are at a critical juncture in this process and we need your support!
If you live in California please email Senator Barbara Boxer and Senator Dianne Feinstein requesting their support for the project.
It's simple and shouldn't take more than 5 minutes of your time!
Here are the steps:
For Senator Boxer:
- Please go to her web form at http://boxer.senate.gov/
- Fill out the required contact information
- Under Select a Topic, choose Health
- Under Message Subject, type: Requested Support for Appropriation for SMA Clinical Trial
- Under Message, copy-and-paste the recommended message text below (you may wish to include a personal anecdote in the highlighted section)
- Hit Submit"
For Senator Feinstein:
- Please go to her web form at http://feinstein.senate.gov/
- Fill out the required contact information
- Under Issue / Topic, choose Health
- Under Please Write Your Message, copy-and-paste the recommended message text below (you may wish to include a personal anecdote in the highlighted section)
- Hit Submit Information
Recommended Message Text:
I write to you as a constituent and as someone personally affected by Spinal Muscular Atrophy (SMA) to respectfully request your support for an innovative research project for which the support group Families of SMA (FSMA) is seeking federal funding, in partnership with California Stem Cell, Inc. (CSC), through the fiscal year (FY) 2010 Defense Appropriations bill. The formal funding request for this project, entitled The Phase I/IIA Clinical Trial for Stem Cell Replacement Therapy in Infants with Type I Spinal Muscular Atrophy, was submitted to your office in the appropriate manner by FSMA and CSC earlier this year, prior to your project request deadline.
This research project represents a significant opportunity to identify a cure for SMA, a presently-incurable, hereditary, neurodegenerative disorder that affects about 1 in 6,000 live births and is the leading genetic killer of children under the age of two. [Insert a few sentences about how SMA affects you.]
The project for which FSMA and CSC seek federal support will transplant motor neuron progenitor cells derived from human embryonic stem cells into the spinal cord of infants suffering from Type I SMA, the most common and deadliest form of the disease. These transplanted cells are expected to replace the infants atrophied motor neurons and partially restore motor activity.
Preclinical safety and efficacy studies have proven successful and the clinical investigators are preparing an Investigational New Drug (IND) application for submittal to the U.S. Food and Drug Administration (FDA). The preclinical components of this research have been privately funded by FSMA and CSC, but a clinical trial is prohibitively expensive; federal support is crucial for moving this project forward.
The project itself has several connections to California . FSMA, the worlds oldest and largest non-profit organization dedicated to curing SMA, has two State Chapters in California, Northern and Southern, with a combined 500 active members. There are approximately 1,500 individuals living with SMA, and nearly 1,000,000 carriers of the SMA gene, currently residing in California.
The clinical trial will be conducted by CSC, a biotechnology company based in Irvine, California. The trials themselves will take place at various CSC-partner academic medical centers throughout Southern California.
Thank you very much for your attention to this critically important matter. I certainly recognize that you receive hundreds of worthy requests for funding through the appropriations process, but I sincerely hope that you will support this project for SMA and help to identify a cure for this deadly disease.
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