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.
MATTAWAN, MI — Eric Kennedy holds his daughter Brielle during a family outing. Both Brooke and Brielle have to wear leg braces to help them stand. Photo Credit, Josh Mauser
Our family finally got down to visit our local Fire Department last month to thank them for all they do and the incredible amount of money they raised for the “Fill The Boot” campaign for the Muscular Dystrophy Association. In just a few short hours they raised over $3,000! For the past two years, they have been the No. 1 volunteer fire department in the state of MI for raising funds for the MDA. Thank you Mattawan Fire Dept!!
Our family with 18 of their 38 person crew. They also have 12 cadets!
B&B on the front of the fire truck.
Brooke in her cool new MFD shirt and the teddy bear they gave her.
Eric and Brielle with her new cool MFD shirt and teddy bear they gave her.
The fire department had training that night and they took the extra time out to meet with us. They were all so nice and had special shirts for the girls and also gave them teddy bears! The girls loved everything about the visit and didn’t want to leave! We promise to go back and visit again soon!
Chad Knaus, crew chief of the No. 48 Lowe’s Chevrolet, answers fans questions about the No. 48 team’s biggest competition and his favorite charitable organization in this episode of “Ask Chad.”
It’s the second question in this video. Click below to watch!
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:
Thank you Aunt Ten for applying for the Proclamation to make the month of August 2012, Spinal Muscular Atrophy Awareness Month in the state of North Carolina!
Monday, December 31, 2012 at 12:47PM | 
MATTAWAN, MI — Eric Kennedy holds his daughter Brielle during a family outing. Both Brooke and Brielle have to wear leg braces to help them stand. Photo Credit, Josh Mauser
