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

A Visit To Our Local Fire Department

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!!

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Our family with 18 of their 38 person crew. They also have 12 cadets!

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B&B on the front of the fire truck.

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Brooke in her cool new MFD shirt and the teddy bear they gave her.

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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!

Thank you for all you do!

Hendrick Motorsports Crew Chief, Chad Knaus answers fans questions about his favorite charitable organization.

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!

http://www.hendrickmotorsports.com/news/video/2012/10/28/Knaus-on-championship-competition-in-this-weeks-Ask-Chad

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Brooke and Brielle with Chad Knaus -Aug 2011 at Michigan International Speedway.

Thank you Chad!!!

Sad news about Grandpa Richard

Eric’s dad passed away this morning. Eric was there with him and able to say goodbye. :( The funeral will be in the morning of August 11th.

Obituary

SPENCER – Richard H. Green of Main Street Spencer, MA passed away at his beloved home as was his wish, Monday, July 23, 2012 at the age of 83, after a tough battle with cancer.  He was surrounded by his loving family at the time of his passing.  Richard was the retired owner of Green’s Flower Shop and a Korean War Veteran.

He is survived by his four step-children: Lorinda Kennedy, Eric Kennedy and wife, Sarah, of Michigan, Troy Kennedy and wife, Heather, of Rhode Island, and Joelyn Durgin and husband, David, of Spencer.  He is also survived by 10 grandchildren.

His brother David H. Green of Lincoln, MA passed away in 2011 and a sister Ruth E. Wright (Warren) passed away in 1995.  He was born in Worcester, Son of Herbert H. and Florence (Knapp) Green. Richard was great, great, grandson of Josiah Green, pioneer and boot and shoe manufacturer of Spencer.

He graduated from David Prouty High School and the University of Maine where he studied forestry.  He was a member of the Spencer Fire Department for 13 years, Chairman of the Ekblaw Chapter Mass Archaeological Society, Member of the Conservation Communion and Spencer Historical Society.  He loved the outdoors and the study of nature and history.  Richard left a wonderful legacy to the Audubon society.  His bequest has helped ensure that the land on Greenville Street will be sustained for the next generation of conservationists.  He was also a mason and member of Spencer Lodge A.F.+A.M. and the First Congregational Church of Spencer.

A memorial service will be held on Saturday, August 11, 2010 at 10:00am at the First Congregational Church, 207 Main Street in Spencer.  In lieu of flowers, donations can be made in honor of his granddaughters’ medical fund to:

“Friends of Brooke and Brielle”

PO Box 740

Mattawan, MI 49071

 

Pillsbury Funeral Home, 163 Main St., Spencer is directing arrangements

NIH Hearing 6/21/12

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Yesterday, the U.S. House of Representatives unanimously approved the Food and Drug Safety Innovation Act. (Read how the associated PDUFA is poised to impact Congressional support for SMA legislation.)

Today, National Institutes of Health Director Dr. Francis Collins will testify today before the Energy & Commerce Health Subcommittee. Dr. Collins will be discussing the National Institutes of Health work across a broad spectrum of disease research including Spinal Muscular Atrophy (SMA). The hearing is scheduled for 9:30 AM EDT. Click here to stream the live hearing.

Update, 12:25 PM EDT - At today’s House Energy and Commerce Health Subcommittee hearing, NIH Director Dr. Francis Collins talked about NIH’s efforts to expedite the development of treatments for a variety of diseases by increasing its emphasis on translational and clinical research. Congressman Upton is submitting SMA-related questions submitted by our family in conjunction with FightSMA for the Record to be submitted in writing to Dr. Collins by our champions on the committee.

Please pray for positive news!!

Here is a picture of Brielle autographing a copy of her Kalamazoo Parent magazine for Mr. Chairman!

"I Can And I Will!" -Brielle Kennedy

Check out this powerful video by the Gwendolyn Strong Foundation featuring Brielle and her perseverence to walk.  The new Team GSF slogan is “Never Give Up!”

“Push your physical strength to the limits to help conquer a disease that robs children of theirs. Run, bike, swim, climb… whether this is your first athletic event or you are a seasoned pro, we welcome all athletes to move their bodies so one day those with SMA can too.” -Team GSF

Meeting up with Chad Knaus - Crew Chief of #48 Nascar Champion Jimmie Johnson

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Last month we were able to make it to the Michigan International Speedway in the Garage and Pit area to check out all of the super fast race cars!  The day started out with a few sprinkles of rain and then the sun came out and made for a perfect day!  The highlight of our time at MIS was a meeting with Chad Knaus!  We had time to do a little catching up with him and Brielle made him laugh by telling him her favorite joke (she learned from her friend Rosie).  “What does a horse say when it falls down?  …I need to giddy up!”  hee hee!

We were able to visit Mr. Chad at his work while we were visiting North Carolina for the Rusty Rudder Golf Outing so the girls made a little picture collage for him and gave it to him as a gift!

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He really appreciated it and proudly displayed it on his desk right next to his prized trophy!  Wow!  :)

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We really apprecaiate the time that Chad took with us and he even gave the girls a few coind to toss in the fountain out front to make a wish!  Brielle wished that she could go back to Aunt Ten’s house.  I think that is one dream that will come true!

Meeting with U.S. Congressman Fred Upton!

Our family met with our U.S. Congressman, Fred Upton to tell him about SMA and ask him to support the SMA legislation in the upcoming weeks/months. He was great and very willing to help, especially after meeting the girls. Brielle politely introduced herself as Sleeping Beauty and her sister as Cinderella! She told him she just turned 4 and her birthday and she said she can read and write. (She was very chatty!) He asked her the biggest word she knows and she replied with “Chimpanzee.” hahaha! We talked a great deal about SMA and told him how she is defying the odds and working hard to get strong and then Brielle showed him her muscles!

Thank you so much to FIGHT SMA for helping us get this all organized and bringing the SMA Legislation to our attention.  These were our talking points with Congressman Upton:

  • Fight SMA has decided to start with a fresh legislative approach in the 112th Congress.
  • Two of your fellow Energy and Commerce committee members, Rep. Cathy McMorris Rodgers (R-WA) and Rep. Lois Capps (D-CA), have agreed to lead the charge in developing bipartisan legislation to accelerate clinical trials – for SMA and other diseases. 
  • Majority Leader Eric Cantor’s health staff will also be working with our sponsors in this important effort.
  • Building on NIH Director Francis Collins’ stated goal to focus even more intently on bringing treatments to patients, our sponsors will work to craft legislation that will advance translational research and human trials, with SMA serving as a model disease.
  • We would greatly appreciate Congressman Fred Upton’s support for this legislation as it is developed in the coming weeks and months.

SMA background and research

  •  SMA is the number one genetic killer of children under the age of two.
  •  SMA is an inherited disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.
  •  SMA occurs in nearly 1 of every 6,000 births and is therefore similar in incidence and severity to other well-known genetic diseases such as cystic fibrosis and Duchenne muscular dystrophy, both of which may also benefit from additional focus and progress on SMA.
  • SMA is caused by the deletion or mutation of a single gene. This is extremely advantageous for genetic screening and therapeutic development.
  •  The gene deletion that causes SMA is carried by one in every 40 people, or approximately 7,500,000 Americans.  Each child of two carriers of the gene has a 1 in 4 chance of developing SMA.
  •  In addition to the gene responsible for the disease, SMN1, scientists have discovered a “back-up” SMN2 gene that can be modulated (“turned up”) to produce more SMN protein.
  •  Modulating genes exist not only for SMA but also for other genetic disorders, including Duchenne Muscular Dystrophy, Parkinson’s, and Alzheimer’s disease. The modulation of these genes holds promise for impacting these disorders.
  •  Private family organizations like FightSMA have been funding SMA research for the past twenty years, and currently fund about $20 Million per year in research.
  • Based on these efforts we have discovered and developed several drug compounds through the pre-clinical stage. 
  • In addition, SMA was selected by NIH and the National Institute of Neurological Disorders and Stroke (NINDS) out of more than 600 neurological disorders for and accelerated drug development program, the SMA Project.
  •  Now we have reached the critical clinical trials phase that will bring SMA research across the finish line to deliver a treatment to affected children.
  •  National clinical trials are far too expensive for private organizations to implement on their own.  Without federal funding to see the research through, we will have wasted the significant government investment that has already occurred.
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Thank you Congressman Fred Upton for your support!

SMA Awareness Proclamation Presentation by Senator Tonya Schuitmaker!

We were presented the SMA Awareness Day Proclamation today from Michigan Senator Tonya Schuitmaker!! What an honor!

“All citizens are urged to take interest in and give full support to the effort to raise awareness and find a cure for SMA.”

In celebration of SMA Awareness Day we are planning two fundraisers and need your help in spreading the word!  All money raised will go to The Families of SMA.

Fundraiser #1: Dining to Donate at Applebees.  All Kalamazoo locations are participating and will donate 15% of anyone that brings in a flyer (or just mentions the SMA Fundraiser) on the day of August 22nd.  This is valid for the whole day and only need one flyer per table!

Fundraiser #2:SMA Art Auction!  Brielle and Brooke painted 8 paintings and we are putting them up for a silent auction on their Facebook Fan Page here: SMA Art Auction (created by B&B) for SMA Awareness Month going on NOW and ending on August 22nd, 2011.  Proceeds go to the Families of SMA Organization and your donations are tax deductible!

Please help us spread the word to make our first SMA Awareness Day successful!   

SMA Candle Lighting, Saturday August 13th at dusk.

SMA Candle Lighting will be Saturday, August 13th at 7:00pm. Join with families and SMA organizations around the country by lighting a candle at sunset to remember those SMA Angels who have lost their battle with SMA and to honor those who are still here fighting everyday!  SMA has taken a lot from us but it will never take our hope or our fight.  

We would love to see you share your photos of your SMA Candle Lighting tonight! Please post your photos on our Facebook page.

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August is SMA Awareness Month!!

Brooke, Brielle and I have been working very hard contacting our state Governor, local Senators and Representatives trying to get a proclamation naming August SMA Awareness month. 

Well, WE DID IT!!  Governor Snyder has named August 22nd as SMA DAY in the state of Michigan!

The Proclamation reads as follows:

WHEREAS Spinal Muscular Atrophy (SMA) is the leading genetic killer of children under the age of two and one in 40 Americans carry the gene that causes SMA and SMA is known to cause degeneration in voluntary muscle movement for those that survive with the disease and

WHEREAS Spinal Muscular Atrophy crosses all racial, ethnic and religious boundaries, and can strike anyone of any age, race or gender and

WHEREAS increased awareness of Spinal Muscular Atrophy will lead to increased knowledge and increased support for both disease research and the families affected by the disease, hopefully leading to a cure and

WHEREAS Patient Groups have named August as National Spinal Muscular Atrophy Awareness Month in order to raise awareness and help promote research into this devastating disease.

THEREFORE, BE IT RESOLVED that support should be given to all organizations that are working hard to find a treatment and/or a cure for SMA, including Families of SMA.

NOW, THEREFORE, it is proclaimed that August 22nd, 2011 be observed as Spinal Muscular Atrophy Awareness Day. All citizens are urged to take interest in and give full support to the effort to raise awareness and find a cure for SMA.

NOW, THEREFORE, I Rick Snyder, Governor of the State of Michigan, do hereby proclaim the August 22, 2011 as Spinal Muscular Atrophy (SMA) Awareness Day.

And the best news is that our family and friends wrote to their local Government officials in honor of Brooke and Brielle and heard back from them too!!

  • Aunt Christen was able to get a Proclamation from the Governor Bev Perdue, for the State of North Carolina declaring August 7th as SMA Day.
  • Grandpa Richard was able to get a Proclamation from Governor Deval Patrick, for the State of Massachusetts declaring the whole month of August for SMA Awareness!
  • Our dear friend Carol in Costa Mesa, CA was able to get her Mayor Gary Monahan to proclaim the whole month of August as SMA Awareness month! 
  • Uncle Bruce received the Proclamation from Governor Janice K. Brewer, for the State of Arizona declaring the whole month of August as SMA Awareness month!
  • The Miedel family received the Proclamation from Governor Bill Haslam, for the State of Tennessee delcaring the whole month of August as SMA Awareness month!

Pictures will be posted soon!! 

Update

on 2012-07-31 20:36 by Sarah

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Arizona ProclamationMassachusetts Proclamation

Michigan Proclamation

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North Carolina Proclamation

Wendy On Wheels Books, A New Favorite!

Today we received our Wendy On Wheels books!  These books are the first ever children’s book series to feature a main character in wheelchair.  The books are written and created by Angela Ruzicka who got the idea from her sister, Amanda, who has spina bifida.

When our package of books got delivered today we ripped open the box and immediately read Wendy On Wheels Goes to the Beach.  Brielle hung on every word and carefully studied each picture.  When that story was done, she wanted to read Wendy On Wheels Goes to the Zoo!  Then without hesitation, she wanted to read Wendy on Wheels Saves the Day!  She loved these books so much that when we were done, she wanted to read them all over again.  Wow, now that’s some serious book love! 

So after dinner and bath time were over, I let her pick one to read before bedtime.  She chose Wendy on Wheels Goes to the Zoo.  There is a funny part where Wendy and her friend Brandon visit the Chimpanzees and the chimps make funny faces at them through the window and Brielle and Brooke laugh and laugh about that.  I like that there is a discussion page at the end with just a few questions that ask how your child would have handled certain situations in the book.  It was fun to hear her answers and rationalizing… at just 3 years old.  

Here are some pictures of storytime before bed with their new favorite books:  

Below you will find the Wendy On Wheels books that are currently available and you can order them through Amazon.

Update

on 2011-03-18 22:12 by Sarah

Vote for Angela Ruzicka in the “Energizer Keep Going” Hall of Fame.  Just click the “like” button!

http://www.energizerkeepgoinghalloffame.com/2011/profile/angela-ruzicka-liebermann.html

Angela Ruzicka Liebermann is the creator of the character and author of the book “Wendy on Wheels.” “Wendy on Wheels” is a ten-year-old young lady who has a blast rolling through life in her wheelchair. Wendy is completely content with her life and makes the best of every new situation that comes her way. Angela believes disabilities are not obstacles to overcome but just represent alternative options. She created “Wendy on Wheels” to motivate children of all circumstances with her exciting adventures because Wendy reminds us all that there are no restrictions in life.

2010 Holiday Wishes from Chad Knaus

What an amazing Christmas gift… awareness about SMA from Chad Knaus!!

http://lowesracing.com/Shop-Talk/Chads-Pit-Box/Chads-Pit-Box-Holiday-Wishes.aspx

Holiday Wishes

Author:Chad Knaus
Date:12.13.10

When you’ve had a year like mine, it’s hard to come up with a holiday wish list. Winning a fifth consecutive championship is about the best present you could get. And winning it the way we did and having to compete down to the last lap made it even better.

So for this holiday season, my wish list will focus on what I’d like to give everyone else.

First, I’d like to wish all the people on the No. 48 Lowe’s team a happy holiday and fantastic New Year. We’ve had a great year together, and next season will be even more incredible.

I’d also like to wish happy holidays to all of the teams at Hendrick Motorsports. We’re one big family, and it will be exciting to watch our family grow and succeed together next season.

For all of the NASCAR and Jimmie Johnson fans out there, I hope next year brings another season of great racing like this year’s. And I hope to see more of you coming out to the racetrack to see the excitement in person.

And I want to wish all of the NASCAR teams, officials and other members of the racing family a great off-season to spend with their friends and families.

Finally, I’d like to wish a very Merry Christmas to two very special little girls: Brielle and Brooke Kennedy. These two amazing little girls deserve an extra special visit from Santa. They are both affected with Spinal Muscular Atrophy (SMA), which is the leading genetic killer of children. Their aunt works at Hendrick Motorsports, which is how I met them. I’d wish for a cure for SMA to help them, and wish that I can continue to help raise awareness and funds for their cause.


Happy holidays everyone! See you in Daytona!

"What Courage Looks Like" -mL Photography

and let me tell you, it doesn’t get any cuter than this.

this is the story of brielle and brooke. the most courageous, wonderfully happy, gentle-spirited, kind, loving just plain *amazing* little people I have ever met. though their story by no means defines them, it is one that must be heard because it is so important and it has changed their lives forever. but you know what? it hasn’t changed *them.* they are way too incredible to let it.

both of these beautiful sisters have a rare and devastating disease known as SMA, Spinal Muscular Atrophy, type II.

beacause that is all the time I am going to give that wicked disease right now. this day was about THEM. about how they are an inspiration to anyone who has ever had to fight for their life or struggled with pain. because, if you didn’t *know* they had SMA, well, then you wouldn’t *know* it. they are just that amazing. their smiles melted my heart and I swelled with love from the moment their big, wild, curly hair (jealous…) and kind eyes graced me with their presence. and from the moment we first met until stickers and the best hugs EVER were exchanged, their smiles never took a backseat.

brielle and brooke? you overWHELM me with your courage and strength.

and believe me, you are about to fall in love, too….

beautiful, bubbly, big laughter, big hearted big sister brielle.

sweet, soft-spoken, silly, spontaneous, super fun, smaller sister, brooke.

every image makes my heart swell. three sizes too big. but the good too big.

**love**

we had a pretty good time I think….and with these two, living life to the fullest and enjoying every moment of it, how could I not do the same??

**love**

just a little supermodel break, you know….

sisters. they are in this thing called life together.

with some serious love and support from their ahMAZing mama. (super gorgeous and kind mama, I might add…)

super serious loving….

I think the feeling is pretty mutual…

courage defined.

strength you never thought was possible from such itty little ones.

but this is what it looks like.

and I think, it is going to be near impossible for anything to get these two down.

actually, I *know* it. and I am so honored to know such amazing, beautiful girls. whom we can never stop fighting for. because I know? they never will either.

Posted by

missy widener

Thursday, September 16, 2010

at

8:41 PM

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

August 22 ~ Declared Spinal Muscular Awareness Day In Michigan.

Brielle and Brooke received a very special certificate in the mail from our Michigan Senator, Carl Levin, in honor of SMA Awareness Day!

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 Brooke and Brielle with the special flag from our Senator.

The certificate reads:

“This is to certify that the accompanying flag was flown over the United States Capitol on August 22, 2010.

At the request of the Honorable Carl Levin, United States Senator, this flag was flown for Brielle and Brooke Kennedy on the occasion of Spinal Muscular Atrophy Awareness Day.” 

Check out our feature in the FSMA Chapter Updates here!