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!

Monday
Mar312014

Team Brooke and Brielle T-Shirts Now Available! 

Many of you have asked about T-shirts in the past and now we have a “Team Brooke and Brielle” shirt made up!  We will be wearing them for the first time May 3rd for the Families of SMA Michigan Chapter Run, Walk and Roll event.  

We are asking $20 for each shirt.  Please be sure to include the size(s) you would like to order in the “add special instructions to seller” section.  Men’s sizing only.  Sizes Small - 2XL. 

Shirts are Vapor brand, made with high-quality, 100% spun polyester to deliver the look and feel of cotton with the benefits of polyester, with superior sweat wicking.

Order here: 

Thank you for your support!!

 

front of shirtback of shirt

Wednesday
Dec112013

Brooke and Brielle are "Decorated Little Generals" in the effort to boost research for rare diseases and they serve as an inspiration for every one of us! -Fred Upton

Chairman Upton is working on another bill - H.R. 2019 - The Gabriella Miller Kids Research Act of 2013.  This bill would prioritize funding for the research of pediatric rare diseases and disorders such as cancer, autism, fragile X and Spinal Muscular Atrophy.  It would eliminate political money and use the funds instead to expand the pediatric research through the National Institutes of Health’s common fund.
While talking on the House floor, Rep Upton mentioned how this bill would help his constituents —>Brooke and Brielle Kennedy and referred to them as “decorated little Generals” in the effort to boost research for rare diseases and they serve as an inspiration for every one of us!  
Wednesday
Nov272013

President Obama Signs NPRNA Into Law!!

BREAKING NEWS!

NOVEMBER 27, 2013

President Obama has SIGNED the NPRNA into law!  We are incredibly excited about what this means for SMA research and our ability to reach a treatmentand/or a cure. THANK YOU to all of our friends who sent letters to their Representatives to help get this bill passed!!   

For more into read the Q&A on FightSMA’s website to learn more about the bill, how it relates to SMA and what happens next visit: http://www.fightsma.org/blog/nprna/qa-the-national-pediatric-research-network-act-and-the-sma-community/

Chairman Upton commented, “At long last we are nearing the finish line, and we will soon have a network in place to help families like the Kennedys in Mattawan, Michigan, and their two young daughters who have the rare disease Spinal Muscular Atrophy. These two little angels, Brooke and Brielle, are little warriors in the effort to boost research for rare diseases and serve as an inspiration for all.” - See more at: http://energycommerce.house.gov/press-release/bill-help-children-rare-diseases-kennedy-girls-sw-michigan-now-one-step-closer-becoming-law#sthash.vh3lgboY.dpuf


Thursday
Nov142013

Mattawan's Kennedy sisters help inspire House bill funding research into rare genetic diseases

MATTAWAN, MI – The medical struggles of two sisters from Mattawan helped inspire a bill funding research for rare diseases that passed the House by unanimous consent this week.

Brooke and Brielle Kennedy were born with type II spinal muscular atrophy. Their battle was chronicled in a 2012 Kalamazoo Gazette story.

The six-year-old and four-year-old have exceeded doctors’ prognoses, but SMA is a terminal, degenerative disease.

“SMA is the leading genetic killer of infants and young children. It is a terminal, degenerative progressive disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves,” according to brookeandbrielle.com, a website set up by Sarah Kennedy, the girls’ mother. “SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow.”

U.S. Rep. Fred Upton, R-St. Joseph, introduced the National Pediatric Research Network Act of 2013, which passed Tuesday as part of the Prematurity Research Expansion and Education for Mothers who Deliver Infants Early (PREEMIE) Reauthorization Act. Upton sponsored the original PREEMIE act, which became law in 2006.

The act supports research into rare and genetic diseases afflicting children, including SMA, by allowing the National Institutes of Health (NIH) to fund pediatric research consortium. Earlier this year, the measure passed the House as a stand-alone bill.

“This legislation will have a dramatic and life-changing effect on so many families who have suffered for so many years,” said Sarah Kennedy in a statement.

Upton said he met the Kennedys a few years ago, when they brought to his attention to a similar bill written to help fund rare diseases affecting children. Upton said he was charmed by the girls and keeps a picture of them in his Kalamazoo office.

“These girls are incredible. The first time I met Brielle and Brooke, they told me their names were Cinderella and Sleeping Beauty. They’re not letting their disabilities define them. But because spinal muscular atrophy is relatively rare, there hasn’t been a lot of funding for it,” said Upton in an email.

The bill will now move to the Senate as part of a package of health-related bills, S. 252. A previous version passed twice during the 112th Congress, once as a stand-alone bill and once as part of a larger piece of legislation. Neither version passed the Senate.

“The sad reality is it is often difficult to conduct research into rare diseases due to the small number of individuals with the disease,” he said. “We are working to change that and provide families with greater hope for a cure or advances in treatment.”


By Yvonne Zipp | yzipp@mlive.com
on November 14, 2013 at 10:45 AM, updated November 14, 2013 at 2:31 PM. Yvonne Zipp is a staff writer at the Kalamazoo Gazette. Email her at yzipp@mlive.com or follow her on Twitter.


http://www.mlive.com/news/kalamazoo/index.ssf/2013/11/mattawan_sisters_inspire_house.html

 

Congressman Fred Upton’s official Press Release:

Upton, House Approve Landmark Children’s Health Research Bill

 

The Energy and Commerce Committee Press Release:

Bill to Help Children with Rare Diseases Like the Kennedy Girls in SW Michigan Now One Step Closer to Becoming Law

Saturday
Sep212013

FDA Approves Gene Therapy For Phase 1 Human Clinical Trials!

I'm beyond excited to share with you the BEST NEWS! The FDA has approved Gene Therapy for human clinical trials starting early next year. The trial will include newly diagnosed children 0-9 months old. If the trial is successful, the flood gates will open for more clinical trials and more children to be included and this could be the CURE for SMA.
Thank you Dr. Kaspar at Nationwide Children's Hospital and The Ohio State University for your tireless work and huge thank you to all of the SMA Foundations, Charities, families and friends that helped in any way to raise funds and awareness! We are so hopeful!