Driven To Give - Gloves Program -by The Dale Jr. Foundation

NASCAR Driver Dale Earnhardt Jr. is wearing cream colored skeleton driving gloves this month at all races in honor of Brooke, Brielle and the many other people who live with ‪#‎SpinalMuscularAtrophy‬
Brooke and Brielle were able to meet him and his fiancée Amy, to personally thank them. B&B had so much fun at Michigan International Speedway and at one point, Brielle said her eyes were tearing up because she was so happy to have this experience. If you have ever been to a racetrack in person you will know what she means, there is so much to see and do! 
Dale Jr. let Brooke and Brielle try on the gloves on pit road by his race car just before the race started and they thought that was really COOL.
Dale Earnhardt, Jr.'s race worn gloves will be put on eBay at the end of the month with proceeds benefiting Fight SMA.
http://stores.ebay.com/The-Dale-Jr-Foundation

INSPIRATION for the 21st Century Cures Initiative

INSPIRATION

May 13, 2015

   

Meet the Two Little Michigan Girls Who Helped Inspire a Big Initiative in Congress

“This is what hope looks like. We should all have their courage to believe in a brighter future, and their fortitude to fight for it every single day. 21st Century Cures looks at disease through the eyes of those who believe it can be beat. Let’s prove them right."

-Chairman Fred Upton (R-MI)

 

Chairman Fred Upton with the Kennedy girls

“I can and I will.” This is the motto of two brave little angels in Mattawan, Michigan, who are battling Spinal Muscular Atrophy (SMA), a rare disease that destroys the nerves controlling voluntary muscle movement. Their names are Brooke and Brielle Kennedy and they are an inspiration for Chairman Upton’s bipartisan 21st Century Cures initiative.

Brooke and Brielle were both diagnosed with Spinal Muscular Atrophy Type II shortly after their births. Their whole lives have been a constant battle with trial treatments and drugs, physical therapy, rehabilitation, and the many daily struggles SMA brings. But Brooke and Brielle have faced these challenges with bravery, optimism, and smiles. 

The Kennedy girls’ bright smiles are infectious. Brooke’s sweet and loving nature alongside Brielle’s enthusiasm for life touches everyone around them. They have a presence that is indescribable. Their cheerfulness and determination compelled Chairman Upton to do all he could to help.

Brooke and Brielle, self-introduced as Cinderella and Sleeping Beauty, first met with Upton in 2011 and told him about their story battling SMA. With the help of their parents, Sarah and Eric, Upton gained a first hand look at the challenges facing families with loved ones suffering from rare diseases. Clinical trials take time and money, research funding is low, the approval process for treatments is slow and inefficient, and the rarity of these diseases means there are very few people to test potential cures. But mostly, there is a lot of frustration and not a lot of hope.

That’s where Brooke and Brielle come in. They were powerful voices that helped Upton and the Energy and Commerce Committee get the National Pediatric Research Network Act signed into law in November 2013 following a multi-year and multi-Congress effort. That was just the beginning. 

 

Brooke and Brielle visit the U.S. Capitol in the summer of 2014

With the help of the Kennedys and many other patient advocates, researchers, and health care innovators, the 21st Century Cures initiative continues to bring hope to those dealing with the thousands of diseases without cures. For the past year, the committee has been gathering information on how Congress can speed up the approval process for treatments and cures, expand medical research, encourage innovation, and ultimately save more lives.    

 

Brooke and Brielle draw the “key to the cure” for Chairman Upton following the April 30 hearing on the Cures discussion draft

Upton plans to have legislation to accelerate cures and treatments for diseases on the president’s desk by the end of this year. This legislation will have the potential to change not only Brooke and Brielle’s lives, but also the lives of many other patients and families across America. Brooke and Brielle may be little, but they have had a big impact in Congress and have inspired hope for so many.

As Chairman Upton said at the April 30 hearing on the Cures discussion draft, Brooke and Brielle “are two of the brightest stars I know. We have a chance to do something big, and this is our time. And it is Brooke and Brielle’s time.”

To learn more about Brooke and Brielle, click here.

To learn more about the 21st Century Cures effort, click here

###

- See more at: http://energycommerce.house.gov/blog/inspiration

Rare Disease Advocates Commemorate Worldwide Awareness Day at the Michigan Capitol

So honored to take part in Rare Disease Day Michigan today as a speaker, sharing our story about SMA, at the Michigan State Capitol. Legislators, legislative staff, the public and the media came together to raise awareness at the state level for the 1 in 10 individuals living in Michigan with a rare disease and the challenges they face. There are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health (NIH). Participating Organizations/Diseases Included: Amyloidosis Foundation, Cystic Fibrosis, Homozygous Familial Hypercholesterolemia, Lambert-Eaton Myasthenic Syndrome, Lysosomal Storage Disorders, Mowat-Wilson Syndrome, Pompe Disease, Rubinstein Taybi Syndrome, Shwachman-Diamond Syndrome, Spinal Muscular Atrophy and Syndromes Without A Name (SWAN).
Huge thanks to Rep. Aric Nesbitt for attending and starting off the event with a great speech!  
Thank you Cure SMA for sending SMA materials for us share at the event to help spread awareness!

ABC NEWS: How Two Young Sisters Cope With a Rare Muscle Wasting Disease

abcnewslogo

We are SO honored our journey with SMA is being featured by ABC News! Hooray for spreading awareness about rare diseases, specifically Spinal Muscular Atrophy! Rare Disease Day is February 28th.  

http://abcnews.go.com/Health/young-sisters-cope-rare-muscle-wasting-disease/story?id=29001370

ABC News' Dr. Richard Besser and The National Organization for Rare Disorders, Inc. (NORD) are co-hosting a tweetchat today from 1-2pm, ET on the topic of Rare Diseases. Join in on the conversation by using the hashtag #abcdrbchat

CharityWERQ Fundraiser in honor of Brooke and Brielle

Having fun at Mattawan's FitZone WERQ class!  Picture taken by Paul Garrod - The Courier Leader

Having fun at Mattawan's FitZone WERQ class!  Picture taken by Paul Garrod - The Courier Leader

CharityWERQ FitZone Mattawan Flyer for CureSMA.

Brooke and Brielle with WERQ instructors Vicki and Laura for a practice dance.

Brooke and Brielle with WERQ instructors Vicki and Laura for a practice dance.

Denise and Sarah at Channel 3 News promoting the CharityWERQ event and raising SMA awareness!

Denise and Sarah at Channel 3 News promoting the CharityWERQ event and raising SMA awareness!

FITZONE OF MATTAWAN WILL BE HOLDING A CHARITYWERQ DANCE-TO-DONATE FUNDRAISER!

Who: FitZone of Mattawan

Where: Antwerp Township Hall

When: Sunday, Octopber 19th 2014 from 1-3pm.  

Cost: $15 per person and $25 for a family.  

(There will also be entry for prize drawings with extra donations of $5 or more at the event.)

All proceeds will be donated to CureSMA in honor of Brooke and Brielle.  

We hope to see you there!

Register or Donate

WERQ is the fiercely fun dance fitness class based on pop, rock, and hip hop music taught by certified fitness professionals. WERQ's blend of achievable dance and non-stop cardio set to currently charting music make this one of the hottest fitness formats around! CharityWERQ events are hosted by WERQ Instructors across the nation with the goal of raising money for worthy causes such as CureSMA.

Press for the event:


Thank you to all of the local businesses who have donated prizes for the drawing during the event!

Michigan House Resolution No. 403. "A Resolution To Declare August 2014 as Spinal Muscular Atrophy Awareness Month In The State Of Michigan!"

Thank you to our Representative Aric Nesbitt for offering Michigan House Resolution No. 403. "A Resolution To Declare August 2014 as Spinal Muscular Atrophy Awareness Month In The State Of Michigan!" It was adopted by the House of Representatives on August 27, 2014. Thank you to co-sponsors Brown, Crawford, Darany, Faris, Haines, Heise, Howrylak, Kelly, Kowall, Lamonte, LaVoy and Phelps.
#smaawareness

Transient

Michigan Senate Resolution No. 166 declares the entire month of August as SMA Awareness month in the state of Michigan!

Thank you Senator Tonya Schuitmaker for delivering Michigan Senate Resolution No. 166 to our house today! This resolution declares the entire month of August as SMA Awareness month in the state of Michigan!! It was adopted by the Senate on July 16, 2014.
The Resolution was offered by Senators Schuitmaker, Anderson, Bieda, Hildenbrand, Kowall and Proos. Thank you!! ‪#‎SMAawareness‬ ‪#‎curesma‬

Transient
Transient