FDA approves first drug for spinal muscular atrophy - Spinraza

December 23, 2016 the U.S. Food and Drug Administration approved Spinraza (nusinersen), the first drug approved to treat children and adults with spinal muscular atrophy (SMA), a rare and often fatal genetic disease affecting muscle strength and movement. Spinraza is an injection administered into the fluid surrounding the spinal cord.

#100Miles4SMA Hosted by Sole2Soul

August is SMA awareness month and we are challenging ourselves and YOU to help us spread awareness and complete 100 Miles for SMA.  Challenge your friends, groups, teams and families to join us on the Facebook event page and post your daily or weekly progress and let us know when you hit 100 miles!  This is a virtual event and can be completed anywhere!  We will be there to cheer you on!

Everyone's A Bride Pub Crawl For SMA Awareness

Have you ever wondered what to do with the old wedding dress in the back of the closet? The "Everyone is a Bride" Pub Crawl is a great way to reuse that old wedding, or bridesmaid dress from your closet.  Lets meet up at Bronson Park and raise some awareness for Spinal Muscular Atrophy! 

A "Conversation on Child Cures" with the Energy and Commerce Committee on Capitol Hill

Sarah Kennedy participated in a “Conversation on Child Cures” with the Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) on Wednesday, March 23, 2016. Sarah, along with several other panelists, discussed the reality of facing rare childhood diseases, and the need for additional funding and support for research that could unlock cures. For a full report on the panel, please follow this link: https://energycommerce.house.gov/news-center/press-releases/curtain-call-conversation-child-cures-rocks-house

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

Sole2Soul Presents #100Miles4SMA!

RunS2S is hosting a challenge of moving 100 Miles in August for two very special girls, Brooke and Brielle, and to bring awareness to Spinal Muscular Atrophy!  

JOIN US HERE!  on.fb.me/1JZeTGC 

Lets bring awareness to SMA by moving 100 awesome miles in August, you never know whose life you'll change!

PLEASE SHARE THIS SO WE CAN GET AS MANY INVOLVED AS POSSIBLE!

HOW IT WORKS:
Run, Walk, Motocross, bike, skateboard, Workout Class, Yoga, Pilates..ANY movement counts towards your miles!
10Min = 1Mile
Log your miles in the Facebook event, receive amazing support, make new friends, encourage others to get their miles in! 

We are making a difference!  Learn more here.

House overwhelmingly passes bill to speed FDA drug approvals

A bipartisan bill that would make significant changes to the process for developing new drugs and medical devices overwhelmingly passed the House in a 344-77 vote Friday morning.

The bill, called 21st Century Cures, was cheered by rare across-the-aisle support from politicians, with 230 co-sponsors nearly evenly split between Democrats and Republicans. The pharmaceutical industry, patient advocacy groups, and medical organizations also support the bill, which calls for an additional $8.75 billion for the National Institutes of Health.

Art Gala by Valerie Ott Photography

Valerie Ott Photography held a color gala last week and 100% of the ticket sales went toward CURE SMA!  Brooke & Brielle had so much fun looking at all the beautiful photographs and meeting all of the models.  
Thank you so much, Riley, for nominating CureSMA as the cause worth doing a fundraiser for and huge thank you to Valerie for all of the work you put into putting this event together and helping us spread the word about Spinal Muscular Atrophy!

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

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- 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

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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!

21st Century Cures Roundtable at Western Michigan University

Eric and I were honored to be able to attend the 21st Century Cures roundtable October 7th 2014 at the Western Michigan University Homer Stryker M.D. School of Medicine.

We were excited to meet Dr. Francis Collins, the Director at the National Institutes of Health (NIH). We were surprised when he already knew about our family and our "Princesses." He was very understanding about the disease (SMA) and compassionate about our daughters.

As National Institutes of Health (NIH) Director Dr. Francis Collins says, "We've never been in more exciting times scientifically than we are right now - But there is no time to waste… Medical illness should not be a political issue. It is an issue for ALL of us." Dr. Collins recently took part in the 21st Century Cures Roundtable Western Michigan University Homer Stryker M.D. School of Medicine. The ‪#‎Path2Cures‬ bipartisan initiative, lead by Chairman Fred Upton, increases national focus on the steps that can be taken to accelerate the cycle of cures. View the entire roundtable video here.

House Energy and Commerce Committee Press Release can be viewed here: http://www.mlive.com/news/kalamazoo/index.ssf/2014/10/post_404.html#incart_river

MLive Article can be viewed here: 

http://www.mlive.com/news/kalamazoo/index.ssf/2014/10/post_404.html#incart_river

Eric and Sarah with Dr. Francis Collins, Director of the National Institutes of Health.

Continued Advancement of Pediatric Research

Eric and I are both thankful for the determination and hard work the non-profit organization, FightSMA, has put into creating the National Pediatric Research Network Act (NPRNA).

Yesterday we came together with FightSMA, leaders in pediatric research, top hospital doctors and advocates to meet with our district's U.S. House Energy Commerce Committee Chairman Fred Upton to discuss the path forward for the implementation of the NPRNA.

We couldn’t be more grateful for Chairman Upton's support for the National Pediatric Research Network Act. We look forward to working with him as we do everything in our power to facilitate critically important advancements in the field of rare diseases and disorders.

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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

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A Princess Pirate Birthday

Happy 7th birthday to Brielle!  

Brielle really wanted to have a princess pirate birthday party this year.  She was so excited to help out with every detail.  She even made her own party invitations!  She made the drawing and then I scanned it in to my computer and added the text.  Next, we burned the edges and added a gold doubloon and then sent them out to friends.

Invitations

Invitations

The cake

The cake

Dad, I’m almost a teenager!
— Brielle (age 7)

We had a treasure hunt and lots of different game stations set up all around the yard.  We were so thankful for a sunny day!

We had plenty of accessories for the kids to dress up even more like a pirate and then they sat down at the table for a "make your own treasure map" craft.  After everyone arrived, it was time to start the treasure hunt!  We split into four groups, the Buccaneers, the Sea Dogs, the Swashbucklers and the Scallywags.

The kids played Captain Hook's Ring Toss, Pin the Treasure On The Map, Dig For Treasure (in the sandbox), Swab the Deck (sweep lots of pirate beach balls around a cone and back), Color & Sign The Cardboard Pirate Ships, and even got Pirate Tattoos!

For lunch, we had Sailing Hot Dogs, Cannon Balls (orange cheese balls), Pirate Jewels (fruit bowl), Fish & Chips (goldfish and potato chips), Polly's Crackers & Gold Nuggets (crackers and cheese), Veggie Planks (carrots and celery).  The food was a huge hit, especially the Sailing Hot Dogs!  

Scurrrvy Pirates!

The pirate themed cake made by Rachel Boswell was amazing and tasted as good as it looked!  Brielle got every present she could have ever dreamed of having and absolutely loved being surrounded by friends and family throughout the day.  She was so happy and felt like every detail of the party was just perfect!  

Thank you to our friends and family for helping us celebrate Brielle's special day, we will treasure the memories forever!

The Kennedy Family

The Kennedy Family

 

Special Thank you's to:

Charity Finstrom for providing her amazing talent: Angelworks Photography

Rachel Boswell for the amazing Princess Pirate cake!

Eric and Sarah's Pirate costumes provided by: The Timid Rabbit 

Treasure Hunt leaders and party volunteers: Sarah, Anna and Mrs. Hastings

Pirate Thank You notes Creatively Stamped by: Christen Tinsley

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

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