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!

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!