The Madagascar Hack! Rugger's Up and Under Golf Outing

The “Madagascar Hack” is back!

Proceeds benefit the SMA Gene Therapy program from Nationwide Children’s Hospital/Ohio State University in honor of Brooke and Brielle.

The golf outing will be held Saturday, June 9th at The Prairies Golf Club in Kalamazoo, MI.

We will have prizes, raffles and more!
Sign up ASAP, there are limited spaces available.

Costs to play: $160 per foursome, includes dinner following at The Up and Under.

Any questions please contact The UP and Under @ (269) 373-1412

SMA Art Auction (Created by Brielle and Brooke) for SMA Awareness Month Raises $1,750 For Families Of SMA!

This is an ONLINE auction on our Facebook Page.  If you don’t have an account please create one and “like” the Friends of Brielle and Brooke Fan Page and place a comment under the painting that you like with your bid. 

Easy as that!!  :)  Proceeds go to the Families of SMA And your donation is tax deductible.

Time

NOW

-

August 22 at 9:00pm

Location

ONLINE

Created By

Friends of Brielle and Brooke

More Info

August is SMA Awareness Month and we are celebrating by having an art auction! All paintings were created and named by Brielle and Brooke!

https://www.facebook.com/f

riendsofbrielleandbrooke#!

/media/set/?set=a.10150288

158398744.353910.345911263

743&type=1

Place a comment with your bid under the picture you like and the winning bid by 9:00pm on Monday, August 22nd WINS!

All proceeds will go to the Families of SMA for research to find a CURE for SMA!

Please invite your friends to this event and help us have a successful Art Auction for SMA!

Thank you!!

There are 8 paintings total. 

Please visit the SMA Art Auction Album on Facebook to place your bid.

dungeon.jpg
Goofy.jpg
nighttime.jpg
NO.jpg
road and animal.jpg
the fire.jpg
this is me.jpg

The Rusty Rudder Charity Golf Outing Raises $4,000 for Families of SMA!!

Time
Monday, September 12 · 11:00am - 2:00pm

Location
Skybrook Golf Club
14720 Northgreen Drive
Huntersville, NC

Created By

More Info
The Second Annual Rusty Rudder Golf Outing. Proceeds benefit The Families of SMA (FSMA) in honor of Brooke and Brielle.

Families of Spinal Muscular Atrophy is dedicated to creating a treatment and cure by:

“Our vision is a world where Spinal Muscular Atrophy is treatable and curable.”

The golf outing will be held Monday, September 12th at Skybrook Golf Club in Huntersville, NC.
We will have prizes for lowest score, longest drive, closest to the hole, raffles and more! We are looking for donations, hole sponsors, golfers, and advertising to help raise as much money as possible. Our goal this year is to have a full field of 144 golfers. If any
one has any ideas or suggestions, please let us know.

Costs to play: in July, $400 per foursome
in August, $500 per foursome
*add $200 to sponsor a hole!


Any questions please contact Eric or Ted @ 704-895-9195

The Madagascar Hack! Rugger's Up and Under Golf Outing Raises $299.00 for Families of SMA

Time
Saturday, June 25 · 11:00am - 2:00pm

Location
The Prairies Golf Club
5303 West Main
Kalamazoo, MI 49009

Created By

More Info
Rugger’s Up and Under Golf Outing “The Madagascar Hack” is back!

Registration is at 11 am with a shotgun start at 12 Noon.
Four person teams and the entry is $60.00 per person. Steak dinner to follow at Up and Under on the Tiki patio. Raffle tickets will be sold at the course and the drawing will immediately follow dinner. Proceeds from the outing will go to benefit Families of Spinal Muscular Atrophy (FSMA) in honor of Brielle and Brooke!

Register early and good luck!

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)

Update

on 2011-05-09 02:15 by Sarah

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.

Check out this post for more details on the special day:  /home/2011/5/8/michigan-chapters-5k-run-walk-n-roll-family-fun-day.html

Update

on 2011-07-13 20:33 by Sarah

7th Annual Families of SMA – Michigan Chapter Run, Walk-n-Roll Draws a Huge Crowd

Published on

June 3, 2011

by

Families of SMA

in

Chapter Stories

Over 300 People Gathered at Hawk Island Park in Lansing and Raised Over $36,000

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 wit

h 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

Update

on 2011-03-26 13:14 by Sarah

Last chance to place an order! 

You can go to www.mythirtyone.com/kimcook 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 hearts content!! March is a great month with Thirty One ~ for each $31 spent, you can choose any purse at 50% off!! 

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!

Update

on 2012-07-17 19:25 by Sarah

Thank you to everyone who came to the party and/or placed an order online!  With your help we were able to raise $298.20 for SMA research!  Kim mailed the check to Families of SMA out today! 

Your order should be arriving shortly!! 

Thank you so much!!

Brooke and Brielle 2.png

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

Fundraiser: Premier Designs High Fashion Jewelry Party Raises $284.75 for Families of SMA!

Time

Thursday, February 3 · 7:00pm - 9:00pm

Location

Main Street Pub

52879 N Main St.

Mattawan, MI

Created By

Sarah K.

More Info

It’s almost Valentine’s Day and what better way to celebrate than having a fun night out with the girls and getting some beautiful jewelry!

Come out Thursday, February 3rd and browse the new 2011 spring/summer jewelry line from Premier Designs! A percentage of all sales will be donated for SMA research.

Can’t make it? Pre-order something beautiful for your spring wardrobe!

What: Premiere Designs High Fashion Jewelry Party

http://www.premierdesigns.

com/

When: Thursday February 3rd, 2011 at 7:00 pm

Where: Main Street Pub/Restaurant, Mattawan, MI 49071

or call in your order by 2/4/11.

How to order:

If you need a catalog please contact:

Sherry Crossley

Phone: 269-629-4588

E:mail: Sherrycrossley@sbcglobal.n

et

1. Fill in all information in the Order Form.

2. Pay your total (a $4.00 Shipping and Handling Fee is added to the subtotal BEFORE adding the 6% sales tax) with cash or check written to Sherry Crossley. If you wish to pay with a CREDIT CARD, write your number in the appropriate box on the order form and seal it in an envelope.

3. This show closes on 2/5/11 Orders take approximately 5 days to ship and up to another five days to deliver.

Thank you for your support!

Your Jeweler: Sherry Crossley

Phone: 269-629-4588

E:mail: Sherrycrossley@sbcglobal.n

et

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

Time
Saturday, May 1, 2010 · 8:30am - 8:00pm

Location Hawk Island Park
1601 E. Cavanaugh St.
Lansing, MI
 
 
 

More Info
FSMA’s 6th annual Run, Walk-n-Roll will take place on Saturday, May 1, 2010 at Hawk Island Park in Lansing.

Over the last 25 years, Families of SMA has been advancing research and serving families in unique and personal ways. Through your support, FSMA has reached several milestones such as:

1996 – Mapping and cloning the SMA gene
1999 – Discovery of the back-up gene, SMN2
2002 – Identification of existing drugs as potential drug candidates for SMA
2009 – Major partnerships with the government and companies such as Repligen, CSC,
Paratek and the NINDS to move new therapies forward to human clinical trials

Please consider coming out and helping Families of SMA in the strides they are making to get us closer to a cure. Our goal is to raise $50,000 so Families of SMA can continue towards the goal of a treatment or cure for SMA!

The online registration is already up and running, so feel free to visit: http://www.fsma.org/Fundraising/EventsCalendar/ click on the Michigan Race, it will take you to our event page where you can see more details about the race, register for the race and/or create a fundraising page for friends and family to pledge a donation for your participation.
This is our personal fundraising page: http://www.fsma.org/LWC/Kennedy

Anyone that knows of anyone that might be interested in Corporate Sponsorship of our race, please have them contact Holly Schafer at 517-668-1810.

Again, thanks so much for all of your past support and we hope to see you all out there on May 1st!

SMA BLOG PARTY: This is SMA

Brielle and Brooke, both have Spinal Muscular Atrophy, type II. SMA is a devastating disease and something I was not familiar with before Brielle’s diagnosis. Since that diagnosis, our lives have changed so much. So many hopes and dreams for our kids went out the window. We still have so much hope for research to find a treatment/cure for this cruel disease and we do our best to have a positive outlook on life and do as many fulfilling experiences for our girls as we can. Our friends and family have been with us every step of the way and we couldn’t have made it through those really tough times without them.

…and even our friends of friends want to help. The owners of the restaurant “Rusty Rudder” on Lake Norman in North Carolina are friends of my sister (aka Aunt Christen) and they held a golf tournament last Monday and want to give all the proceeds to Families of SMA in honor of Brielle and Brooke. They held a golf tournament at Skybrook golf course, then complimentary food and live music and a silent auction at the Rusty Rudder after. The music was awesome and they even let Brielle play the drums along with the guys playing the live music. It was a perfect night and a beautiful sunset. A night we will never forget and we can’t thank them enough for choosing SMA for the proceeds!

 

Skybrook Golf Course, North Carolina

It was warm!

It was warm!

Thank you Hendrick Motorsports for sponsoring a hole!

Thank you Hendrick Motorsports for sponsoring a hole!

Four Generations!  Sarah (mom), Brooke, Grandma Liz, Brielle, Aunt Christen, and Great-Grandma Gladys.

Four Generations!  Sarah (mom), Brooke, Grandma Liz, Brielle, Aunt Christen, and Great-Grandma Gladys.

B&B thought the golf cart was so fun!

B&B thought the golf cart was so fun!

Trying to get a “hole in one” to win 2 brand new jet skis. 

Trying to get a “hole in one” to win 2 brand new jet skis. 

Complimentary sponsorship by Friends of Brielle & Brooke.

Complimentary sponsorship by Friends of Brielle & Brooke.

Rusty Rudder last place award.  :)

Rusty Rudder last place award.  :)

Brielle playing the drums at the Rusty Rudder later that night.

Brielle playing the drums at the Rusty Rudder later that night.

Beautiful sunset over Lake Norman.  Our view off the deck of the Rusty Rudder.  A perfect way to end the night.

Beautiful sunset over Lake Norman.  Our view off the deck of the Rusty Rudder.  A perfect way to end the night.

What is SMA?

SMA kills more young children than any other inherited disease, is the most common cause of genetic infant mortality, is the #1 genetic killer of young children.

SMA is degenerative, causing the weakness and wasting of voluntary muscles — eventually impacting crawling, walking, standing, sitting up, coughing, breathing, swallowing, speaking…anything requiring muscle strength.

SMA is estimated to occur in 1 out of every 6,000 live births. Incidence rates are comparable to the more well known ALS/Lou Gehrig’s disease and Cystic Fibrosis.

1 in every 40 people unknowingly carries the SMA causing gene or nearly 8 Million potential parents in the U.S. alone — making it “common.” Both people must be carriers for the disease to be passed on — making it “rare.” There are simple blood or saliva tests available to learn if you are a carrier before you get pregnant. The American College of Medical Genetics recommends ALL couples be tested for SMA.

SMA is terminal. There is currently no treatment or cure… BUT there is much research work being done around the world and it holds enormous potential. In fact, the National Institutes of Health selected SMA as the disease closest to treatment.

Of course while we were in North Carolina, we had to stop in to see our favorite Crew Chief, Chad Knaus!

Of course while we were in North Carolina, we had to stop in to see our favorite Crew Chief, Chad Knaus!