About Us

Brooke and Brielle have both been diagnosed with Spinal Muscular Atrophy Type II.  There is no cure for this disease but the National Institute of Health believes a cure can be found within the next 5 years with proper funding. 

Our family has created this page to inform you about the disease, spread awareness and give updates about our life with SMA. 

Make A Donation

All donations will go towards Brooke and Brielle’s medical needs fund.

Shop! Inspirational Prints & Awareness Bracelets

All proceeds are donated to Brooke and Brielle’s medical fund!

Thank you Angi!


 

Get your Brooke and Brielle Awareness bracelets HERE!

Thank you Alex!

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Monday
Jun252012

NIH Hearing 6/21/12

Yesterday, the U.S. House of Representatives unanimously approved the Food and Drug Safety Innovation Act. (Read how the associated PDUFA is poised to impact Congressional support for SMA legislation.)
Today, National Institutes of Health Director Dr. Francis Collins will testify today before the Energy & Commerce Health Subcommittee. Dr. Collins will be discussing the National Institutes of Health work across a broad spectrum of disease research including Spinal Muscular Atrophy (SMA). The hearing is scheduled for 9:30 AM EDT. Click here to stream the live hearing.

Update, 12:25 PM EDT - At today’s House Energy and Commerce Health Subcommittee hearing, NIH Director Dr. Francis Collins talked about NIH’s efforts to expedite the development of treatments for a variety of diseases by increasing its emphasis on translational and clinical research. Congressman Upton is submitting SMA-related questions submitted by our family in conjunction with FightSMA for the Record to be submitted in writing to Dr. Collins by our champions on the committee.
Please pray for positive news!!
Here is a picture of Brielle autographing a copy of her Kalamazoo Parent magazine for Mr. Chairman!

Reader Comments (1)

We will keep praying for some positive news!! Love love love the picture of Brielle autographing her picture for Mr. Chairman!

June 29, 2012 | Unregistered CommenterKendra

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