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!

YouTube Videos
Saturday
Dec262009

Chad Knaus's Three Wishes - Sporting News

Sporting News’ 50 Most Beautiful People:  Chad Knaus

http://www.scenedaily.com/news/articles/sprintcupseries/Sporting_News_50_Most_Beautiful_People_Chad_Knaus.html

Sporting News asked that question of readers, fans and those who cover the sport, and the results weren’t limited by traditional definitions of beauty. The editors considered fan favor

 

Who are NASCAR’s most beautiful people?

The sites and sponsor favorites and gave them points, and they also awarded points to “those were were making waves in the sport.”

The results of this non-traditional approach are now out with the publication of NASCAR’s 50 Most Beautiful People. The special edition is now available on newsstands and at the online store at www.streetandsmiths.com.

SceneDaily is running the list, with one person from the top 50 to be featured each day. Only the top selection was ranked, with the rest following in a random order that allows fans to decide who should be ranked where.

Today’s installment features Chad Knaus, four-time NASCAR Cup championship crew chief with the No. 48 Hendrick Motorsports team of Jimmie Johnson.

Born: Aug. 5, 1971
Birthplace: Rockford, Ill.
Current residence: Cornelius, N.C.

In his words:
First job: I was washing cars in a used car dealership. I was working at a detail shop. I was 13 at the time, maybe 12.

Last year … [We won] our third straight [Cup] championship.

Pet peeve: I’d say, uncleanliness. I like things to be clean and neat and orderly. I’m a little anal retentive, a little type-A.

Can’t live without … my job. It’s everything I live for. I have a great group of guys. I have a great job. It’s definitely the one thing I’m most proud of and wouldn’t want to be without it.

Life-changing moment: We had a plane crash that took the lives of many who were very close to us. That was probably the largest reality check. It made me realize there’s a lot more to what we do and it means a lot more to people than what you may think. Watching the Hendricks go through what they did, it makes you understand relationships with people and understand love and what they mean to you.

In 10 years … I hope that I am married with a child or children and healthy and still involved in the sport.

Vacation: I typically will go to an island, somewhere where I can go scuba diving or snorkeling.

Best race track/city: Obviously Las Vegas is fantastic. It’s a cool city; there’s a lot going on. The facility at the track is awesome, and it’s very fan friendly. But they’ve (race tracks) all got their little twists. Infineon is cool. It’s a neat area. It’s beautiful with the mountains and the vineyards. I like going up there and staying at the winery. A lot of fans like that. There’s the going up and doing the wine tasting and there’s a lot of great restaurants. It’s a lot of fun.

Three wishes: My first wish would be to have a good wife and family. A successful family relationship — that would be awesome. My second wish would be to help kids. A friend of mine has two daughters who have spinal muscular atrophy (a genetic disease that causes muscle degeneration and weak-ness); if I could help them, I would. And my third wish would be to get three more wishes.

Thursday
Sep242009

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.

Brielle with Chad Knaus
Brielle with Chad Knaus

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.

Wednesday
May062009

Team Lowes's Racing - Thank the Military and Show Your Pride

This was around Memorial Day 2010. I wanted to share a special message my sister submitted about Eric and it got published!

“This is a photo of my brother-in-law, Major Eric Kennedy serving in Afghanistan in the 33 rd infantry Brigade at CampPhoenix.  He is there to provide medical support to the people of Afghanistan.  Some of those folks have never seen a doctor before so they are providing milk and vitamins to children as well as treating several adults that desperately need medical attention.  Our folks are setting up medical clinics that the Afghanistan people will be able to take over once they receive all the training we are providing to them.  The best news our family has received in a while is that Major Kennedy has received his papers to come home next Tuesday and is expected back in the States on Memorial Day Weekend! Thank you for all that you have done Eric and we can’t wait to see you!” – Christen Tinsley

 http://www.lowesracing.com/Fan-Zone/Memorial-Day-Salute.aspx

Eric doing work in Afghanistan for the US Army

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