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.

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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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Wednesday
Oct242012

Rep. Fred Upton Commercial featuring Sarah, Brooke and Brielle!

Rep. Fred Upton has always been open and willing to meet with us and listen to our needs.

Congressman Upton is the US House of Representatives Chairman of the Energy and Commerce Committee. Last month, he spoke on the House floor in support of getting the National Pediatric Research Network Act (NPRNA) passed and talked about meeting with our family and how much our story of SMA has touched him. His leadership was critical to its passage in the House. NPRNA is a bipartisan pediatric research consortia measure that would benefit multiple rare diseases including SMA. It will help us put in place urgently needed clinical trial infrastructure so we can move several promising therapies to FDA for approval and increase federal funds for SMA research.

Congressman Upton asked our family if we would help with a commercial spot for him. So, of course, we were willing to help out!  Eric, is currently active duty right now so it is best that he did not participate (he is working out of a local office and not going overseas, thank goodness!).

We spent a few hours filming and I just spoke candidly and from the heart. I almost wish I had cue cards because I was so nervous! :) I said, “SMA is kind of like a form of Muscular Dystrophy” but what I should have said is, “SMA IS a form of Muscular Dystrophy.”  Oh well… you get the idea.  

From that interview, they formed an amazing 60 second commercial that I just saw on tv for the first time this morning!! It just brought tears to my eyes. It’s huge awareness for SMA! Watch for us on on the local channels!

If you are not local, you can watch the video here:

 

Vote for Fred Upton!

Reader Comments (1)

You did an amazing job! Couldn't tell you were nervous at all! I love the commercial!!

October 26, 2012 | Unregistered CommenterKendra

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