Our family was featured in our local newspaper, The Kalamazoo Gazette!

Mattawan family looks to defy odds in fighting rare muscle disease afflicting 2 young sisters.

I can and I will.

This is the mantra that has driven the Kennedy family to find normalcy in an unforeseeable future.

Eric, Sarah and their two daughters, Brooke, 4, and Brielle, 5, are the epitome of an American family.

…Read More Here…

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

Join in on the blog party! Write on your blog about SMA and help us spread awareness.

Photo taken by  Angelworks Photography

Photo taken by Angelworks Photography

photo via Friends of Brielle and Brooke

See those two little angels up there?  Absolutely precious.  They are the daughters of a friend of mine and they have SMA.  Spinal Muscular Atrophy is a degenerative disease which weakens the muscles of its’ victims - and it is terminal.  It is a physical disease which ravages the body yet leaves the mind in tact.  There is currently no treatment, but it tops the list as the closest to the cure for over 600 neurological diseases.

Brielle and Brooke have been diagnosed with SMA Type II.  There are four types, with Type I being the most devastating and Type IV giving the longest survival statistics.  I remember following their story via Facebook as their mother at first showed concern that Brielle wasn’t moving as she should be at 12 months and then reading the updates as she took her to doctor visit after doctor visit.  Sarah was due with Brooke at the time and her husband, Eric was being called up for active duty.  They learned shortly after Brooke’s birth that both girls were positive for SMA Type II.  Five days later Eric left for Afghanistan.  The entire family have become activists not only for Brielle and Brooke, but for the entire SMA cause.  This disease is not only emotionally draining, but financially trying, as well.  The girls need special equipment to help them be ambulatory, their van needed to be retrofitted, there is travel to and from doctors and clinics located across the country.  They have a long road ahead. 

Today is SMA Blog Party day and I encourage you all to follow this link -

http://www.voteforsma.com/

 which will take you to the Jimmie Johnson Samsung Helmet of Hope ballot.  Vote everyday for the Gwendolyn Strong Foundation and SMA could be $20,000 closer to a cure!  Please post and repost and blog and reblog for SMA today.

Courtesy of Amateurian:

View her super cool blog here and make sure to read her memoir!

http://amateurian.blogspot.com/2010/09/blog-for-sma.html

"Betting on Brielle and Brooke" -Team Lowe's Track Record Magazine

August is SMA Awareness month! Brielle and Brooke are featured in an article with Chad Knaus inside the Lowes quarterly racing news magazine called, “Track Record.” This magazine goes out to 750,000 homes! That’s right, SEVEN HUNDRED AND FIFTY THOUSAND homes!!! What great awareness! Thank you Lowes & Chad for helping us raise awareness about Spinal Muscular Atrophy!!

Betting on Brielle and Brooke

Author:

Chad Knaus

Date:

08.09.10

Usually, the only gambling I do is on two tires versus four during a pit stop, or maybe on fuel mileage.  But I had an opportunity recently to bet on something far more important – at a casino night to benefit Brielle and Brooke Kennedy.

Brielle and her sister Brooke are both affected with Spinal Muscular Atrophy (SMA), which is the leading genetic killer of children.  Their aunt works at Hendrick Motorsports, and that’s how I met them.

The girls are adorable.  They’re very cute and very sweet. They’re extremely resilient and tough little ladies.  They definitely touched a soft spot in my heart and I wanted to help them any way I could and get some awareness out there.

We just held a poker tournament for them and a number of drivers and crew chiefs came out. We were able to raise a lot of money for these little girls and for SMA.

It’s really nice to be able to help this family.  It’s such a rare disease, and to have two little girls in that family affected by it, is just terrible.  I like the fact that I can help to a degree, and wish I could help more.

One exciting thing is that we’re looking for ways to help them with a wheelchair accessible conversion for their van so they can travel easier.  The poker night went a long way in raising money for their van, so we plan to have it for them soon.

They usually come to the Michigan race, so hopefully I’ll see them in the fall.  They all came to the race last year, and it was great to see how much they enjoyed it.  I had a chance to give Brielle a tour of the transporter, introduce her to some drivers and even put her in the racecar.  I knew our day was complete when she wished me luck on the race.

If other people would like to make a donation for these great little girls, they can contribute to:

Friends of Brooke & Brielle 

P.O. Box 740

Mattawan, MI  49071 

It’s an honor for me to be able to help this family and to see the progress of Brielle and Brooke.  It’s a bet that’s paying off in the most important ways.

Online version of the article:

http://www.lowesracing.com/Shop-Talk/Chads-Pit-Box/Chads-Pit-Box-August-2010.aspx

Brielle and Chad Knaus.

Racing Towards A Cure - FightSMA

Sarah Kennedy had just given birth to her second daughter last December when her 16 month old daughter, Brielle, was diagnosed with spinal muscular atrophy (SMA) type II. Five days after hearing this devastating news, her husband Eric was deployed to Afghanistan with the Army. While they were apart, Eric and Sarah were forced into action to determine how best to care for Brielle and also to deal with the possibility that the new baby, Brooke, may also be affected by the disease. While Eric was deployed, Sarah tackled the heavy work of contacting doctors and therapists and creating a plan for Brielle’s treatment and on top of all that, decided to have Brooke tested. When Brooke also tested positive for SMA type II, she was enrolled in the “Prospective Phase I/II Study to Evaluate Effects of Sodium Phenylbutyrate in Pre-symptomatic Infants with Spinal Muscular Atrophy” (or “STOP SMA”) study being conducted by Dr. Kathryn Swoboda at the University of Utah, with funding from FightSMA.

The extended Kennedy Family became involved with the larger SMA community, participating in fundraisers and contacting their Congressional Representatives about the SMA Treatment Acceleration Act. Sarah’s sister in North Carolina, Christen, introduced her co-workers at Hendrick Motorsports to SMA. After meeting Brielle for the first time at a race in Michigan, (with Christen’s help), Chad Knaus, the crew chief for three-time NASCAR Sprint Cup Champion driver Jimmie Johnson, became interested in this little known disease and asked what he could do to help raise awareness.

Chad started by adding informational links about the disease to his personal website, but recently he has gone a step further. Chad will be sponsoring a hole at the upcoming Jimmie Johnson Foundation Annual Golf Tournament and has chosen to include the FightSMA logo on the sign posted at the sponsored hole. We thank Chad Knaus and the Jimmie Johnson Foundation for including FightSMA and for this wonderful opportunity to raise awareness of SMA.

Courtesy of FightSMA.  View the article here.