Make A Donation

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

Sunday
May082011

Michigan Chapter's 5K Run, Walk-n-Roll & Family Fun Day

Saturday was an absolutely beautiful day and we all started out great.  Eric raced and we walked and Brooke and Brielle rolled.  Brielle’s chair was too slow so when dad made his second and last lap of the 5K he picked Brielle up and ran with her until he crossed the finish line! 

Brooke and Brielle participated in the kids fun run and the best part of the day was when they stepped across the finish line!!  I was helping Brooke take her steps and when I heard everyone cheering for the girls as they got closer to the finish line I started to tear up!  What an amazing moment!  Yay for Brooke and Brielle, we are all so proud of you! 

 

Finish line video:

Team Brielle and Brooke raised $1,738.00 for the Families of Spinal Muscular Atrophy (FSMA) Walk-N-Roll today! Thanks to all of our amazing friends and family for your support, it means the world to us.

 

Friday
Mar182011

7th Annual Michigan FSMA 5K Run, Walk, & Roll & Family Fun Day

Come join team Brielle and Brooke May 7 for the

 Michigan Chapter FSMA walk-n-roll 5K!

Your tax-deductible gift will bring us one step closer to creating a world where Spinal Muscular Atrophy is treatable and curable!

 

 

Time
Saturday, May 7 ·  9:30am - 12:30pm

Location
Hawk Island Park - Lansing, MI

Created By
Michelle Elsbrie Fox

More Info
8:30am Early Registration
9:30am 5K Walk/Run
10:15am Kids’ Fun Run

The Run, Walk, & Roll is a fun family event with music, raffles, & clowns offering face painting & balloon animals for the kids!

Medals will be given to the 1st, 2nd, & 3rd participant in each division.

(No pets please)

 

Tuesday
Mar012011

Realizing the Dream Gene Therapy Program: Phase One

>>Click here to read about Phase Two of the Realizing the Dream Gene Therapy Program

 

$250,000 Goal Reached and Exceeded!

FightSMA and the Gwendolyn Strong Foundation are thrilled to announce that we have reached and exceeded the $250,000 goal set out for our Realizing the Dream Gene Therapy Program. The money was raised in just six months! To say we’re thrilled doesn’t describe the emotion.

From the Gwendolyn Strong Foundation’s Victoria Strong:

With the help of literally thousands of donors, hundreds of organizers, 60+ fundraisers, and through our partnership with FightSMA, together we have raised more than $250,000!!! In. Just. Six. Months. And because we have raised beyond what was expected, we are able to already begin funding the next critical phase of necessary research required to bring gene therapy out of the lab and to the thousands impacted by spinal muscular atrophy!!!

From FightSMA’s Science Director, Dr. Chris Lorson, PhD:

This would not have been possible without the extremely dedicated effort from the Strong family and all of the SMA families and friends that reached out to help over the past several months. The gene therapy project is led by Dr. Brian Kaspar (Nationwide Children’s Hospital). Recently, Dr. Kaspar and colleagues have shown dramatic survival benefits using scAAV9-SMN vectors. It is a long road from mice to humans and to bring this vector closer to a clinical trial, many steps must occur, with safety and toxicology studies being essential. This is where FightSMA and The Gwendolyn Strong Foundation have come together and provided support. This is clearly a community-wide effort and it will take more money and more time to bring a gene therapy trial to fruition and FightSMA and The Gwendolyn Strong Foundation are continuing to push hard to make this a reality.

From Dr. Brian Kaspar, PhD, Principal Investigator at Nationwide Children’s Hospital, whose lab has received funding for safety and toxicity through this campaign:

I am very thankful for the FightSMA and Gwendolyn Strong Foundation funding of $250,000 our lab has received to date — funding that has allowed the initial safety and toxicity studies to be conducted. We are in the middle of these key studies, and so far, all looks good.

So, who is responsible for this great accomplishment? You are! FightSMA could not have been successful without help.

FightSMA Chapters and Partners

Gwendolyn Strong Foundation

Andrew’s Buddies of the

Tri-State Area

Andrew’s Buddies of New York

Andrew’s Buddies of Illinois

Corinna’s Angels/FightSMA Rhode Island

Desiree’s Buddies/FightSMA Southwest

Andrew’s Buddies/FightSMA MechanicsvilleC

Dylan’s Friends/FightSMA Utah

FightSMA Alabama

FightSMA Connecticut

Morgan’s Buddies/FightSMA Tidewater

FightSMA Richmond

Hannah’s Buddies/FightSMA Tampa Bay

Joshua’s Buddies

FightSMA Nevada

Patrick’s Buddies

Shannon’s Buddies

SMAtlanta/FightSMA Atlanta

Tori’s Buddies/FightSMA Canada

StopSMA

The Wallace Family

Grey’s Gang/Charlotte, NC

Climb4SMA/Jadon’s Hope

The Kennedy Family 

Michelle Nyhuis 

Thanks to everyone who made this possible!

Note: Article taken directly from FightSMA, click here for the link.

Thursday
Feb242011

Fundraiser: Thirty-One Gifts Party Raises $298.20 for Families of SMA!

 

Time
Thursday, March 24 ·  7:00pm -  10:00pm

Location
TGI Fridays
5650 West Main Street
Kalamazoo, MI

Created By
Kim Sexton Cook

More Info
Spring is on its way ~ what better way to celebrate than having a fun night out with the girls and help to raise monies to be donated to www.fsma.org (Families of Spinal Muscular Atrophy).

Come out Thursday, March 24th and browse the New 2011 Spring/Summer Thirty One line! A percentage of all sales will be donated to www.fsma.org!

Can’t make it? No worries ~ you can shop with ease online!! You can go to www.mythirtyone.com/kimcoo k On that page you will click on “My Events” which will be on the right hand side of the page ~ and you will click to shop “Sarah’s SMA FUNdraiser” and shop to your heart’s content!! March is a great month with Thirty One ~ for each $31 spent, you can choose any purse at 50% off!!

What: Thirty One party to help raise monies for SMA!
http://www.mythirtyone.com /kimcook
When: Thursday March 24, 2011 at 7:00 pm
Where: TGI Friday ~ 5650 West Main Street ~ Kalamazoo

If you have any questions, or would like a catalog please call Kim Cook 269.599.8886 or you can email Kim: kimber79@gmail.com

Thank you for your support!
Kim Cook
269.599.8886
kimber79@gmail.com
www.mythirtyone.com/kimcoo k

 

Monday
Jan312011

1st Annual Rusty Rudder Golf Tournament Helps Raise $4,000 for Families of SMA

Friends of Brielle and Brooke Kennedy and The Rusty Rudder Work to Raise Awareness about SMA

Skybrook Golf Course in Huntersville, North Carolina, hosted The Rusty Rudder’s 1st Charity golf tournament for Families of SMA.  It was a beautiful day that hosted over 140 golfers.

Brielle and Brooke Kennedy, who suffer from Spinal Muscular Atrophy (SMA) Type II, stole the hearts of many in the Charlotte, NC region. Both Eric Paul and Brian Johnston, of The Rusty Rudder Management Staff, knew they had to do something to help.  They both met the girls earlier in the year at a casino night fundraiser for the girls, hosted at Hendrick Motorsports, and they wanted to do everything they could to help find a cure to this devastating disease.  Eric and Brian rallied the community and vowed to raise monies and awareness for SMA. A golf tournament seemed the perfect fit and away they went to the drawing board, and on September 13th, they held their first ever charity golf tournament.

“We knew we had a lot to do in a short period of time, but we’d do anything we could to help these two sweet little angels”, said Eric Paul, Owner of The Rusty Rudder.  The ladies and gentlemen that participated teed off to a shotgun start, captain’s choice format and finished up around 4:00pm.  After golf a reception was held back at The Rusty Rudder with complimentary food, cocktails, friends and family.  “We couldn’t have asked for a better turnout the first time and we can’t wait to start planning again for next year”, said Brian Johnston, General Manager of The Rusty Rudder.  Kristin Balzer’s team won the tournament and bragging rights for next year.  “The Rusty Rudder is a great place to work and my father and his team were thrilled to participate and can’t wait to defend the winning title until next year”, said Kristin Balzer, bartender at The Rusty Rudder.  If you are ever in the Cornelius area of Lake Norman, NC, home to many superstars of NASCAR, please be sure to stop in at The Rusty Rudder and say hi to Eric and Brian!  Also, keep an eye on EBAY auctions under The Rusty Rudder for opportunities to bid on Used Raced NASCAR sheetmetal from Kasey Kahne, Richard Petty, AJ Allmendinger, Carl Edwards and many more.

Altogether, The Rusty Rudder Golf Tournament raised $4,000 for Families of SMA!

- Eric Paul of The Rusty Rudder & Christen Tinsley of HendrickMotorsports and Friends of Brielle and Brooke Kennedy