2017 Northern California Walk-n-Roll

Golden Gate Park

2017 Northern California Walk-n-Roll

Hi!  It's me, Annie!  I just turned 4 years old.  Thank you for helping me!
Hi! It's me, Annie! I just turned 4 years old. Thank you for helping me!

Team Annie

Hello family and friends!

Walk with us to raise money to find a cure for Annie - for the 15th Annual Walk-n-Roll in Golden Gate Park on August 20th.

Each week we are all asked to participate in or donate to a fundraiser or event (at least it seems like it).  And we know you are ALL already generous in giving your time, money and energy to these always good causes.  This of course is another one and it's the most personal one for us - because it has to do with helping Annie.  Annie has SMA.

What is SMA?  We had to look it up too.  It's the disease Annie was diagnosed with last October.  It stands for Spinal Muscular Atrophy.  And it's as bad as it sounds.   It's a genetic disease that has no cure, and up until this past December - no treatment. But, there is progress and hope - please keep reading.

Here’s how SMA works: 

In the spine there is a particular gene (SMN1 – survival motor neuron 1) that produces a particular type of protein.  That protein is essential to the healthy development of motor neurons, which people need in order to do many things: walk, run, swallow, breath.

In SMA patients, the SMN1 gene is mutated – and either doesn’t produce the necessary proteins at all or doesn’t produce enough of them.  So, the motor neurons are weak or die off leaving the body’s muscles to atrophy without use.  SMA does not affect brain function - and as many of you know - Annie is one smart, funny, happy four year old.

THE GOOD NEWS IS:  Researchers know what causes SMA and they know what's needed to develop effective combination treatments.  The FDA approved the first ever treatment for SMA in December, which brings us closer to a cure.  Annie started this treatment in April.  And so, we are hopeful!

By walking with us, or making a donation through this request - the donation goes to an organization called CureSMA.  They are uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible. 

BONUS:  We will match all donations dollar-for-dollar until the goal is reached. If you register for the walk for $25 - we add another $25 to the fund.  If you can't join us for the walk, but donate $500 - we'll add $500 to the fund!   And ALL of the money goes directly to CureSMA to be used to focus on finding a cure. 

If you can walk with us, we're excited and can't wait to see you - and the details are below. If you can't walk with us, which we do completely understand, we hope you'll consider donating to help find a cure.

Here are the details for the walk:

  • Date:  Sunday, August 20
  • Time:  9:30 am - 1:00 pm
  • Location:  Golden Gate Park 
  • Registration Fees:  Adults $25, Child 12 & Under $10 (fee includes T-shirt, snack and lunch).
    • More information visit :  www.smanorcal.org

We hope to see you in San Francisco in August.

Let's find a cure!  Let's do this!

Cathy, Matt, Brittany & Annie

P.S. 

Making a donation to Cure SMA is easy and secure. Just click on the link and follow the steps!

Cure SMA will never sell or share your personal information. They will notify us that you have made a donation, so that we can properly thank you, unless you choose to make your donation anonymously.

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