Annie's Sparkle Shimmer Team
Hello family and friends!
Walk with us to raise money to find a cure for Annie - at the 16th Annual Walk-n-Roll in Kennedy Grove Park (near us, in El Sobrante) on Saturday, August 25th. Put it on your calendars and join us!
Each week we are 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 when we first heard it. It's the disease Annie was diagnosed in October 2016. It stands for spinal muscular atrophy. And it's as bad as it sounds. SMA is the number one genetic cause of death in infants, and 1 in 50 people is a genetic carrier for SMA. SMA has no cure, and up until December 2016 - no treatment. But, there is progress and hope - please keep reading.
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 2017, which brings us closer to a cure. Annie has been on this treatment for over a year. This drug (Spinraza) is supposed to stop or slow the natural progression of the disease. And we believe it is! But we still need a cure, and we need new treatments that will help Annie gain muscle strength.
By walking with us, or making a donation through this request - the donation goes to an organization called Cure SMA. They are uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible. They have already invested $70 million in research.
BONUS: Your donation to Annie's Sparkle Shimmer Team will be MATCHED dollar-for-dollar by Annie's Grandpa (Gael Barsotti) until we reach our goal! Go Dad!! If you register to walk with us for $25 - we add another $25 to the fund. If you can't join us for the walk, but donate $500 to Annie's team - he'll add $500 to the fund! And ALL of the money goes directly to Cure SMA to help find more treatments and 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, we hope you'll consider donating to help find a cure.
Here are the details for the walk:
- Date: Saturday, August 25
- Time: 10:00 am - 1:00 pm
- Location: Kennedy Grove Regional Recreation Area / 6531 San Pablo Dam Road, El Sobrante, CA 94083
- 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 August.
You can register for the walk and join Annie’s Sparkle Shimmer Team by visiting: http://events.curesma.org/goto/anniessparkleshimmerteam
Let's find a cure! Let's do this together!
Cathy, Matt, Brittany & Annie
Making a donation to Cure SMA is easy and secure. 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.