Skylar Marie Jones was diagnosed with SMA (Spinal Muscular Atrophy) at the beginning of 2010. SMA a recessive genetic disorder where both parents have to be carriers and there are different severities, but all are degenerative and affect all voluntary muscles. Over 7.5 million Americans are carriers – most unknowingly. SMA is the number 1 genetic killer of children under the age of two.
Type 1, the type of SMA Skylar has, is the more severe and based on statistics, 90 percent of babies with type 1 don’t make it to their first birthday. All voluntary muscles are affected and just get worse over time – swallowing and breathing are the two main voluntary functions affected that typically lead to death. It’s supposedly the genetic disease closest to a cure, so we’re hoping for our sake and for the sake of others, that happens soon. The more awareness we can bring to this disease, the better chances we have of fundraising, and more money will go to research.
Thanks to the Jones’ church, you can make a tax-deductible donation to support Skylar. Just write a check to Trinity Anglican Mission and send it to the address below with a note indicating the gift is for the Jones’ family.
10k for Skylar
244 Kigian Trial
Woodstock GA 30188
If you own a business or our would like to be a corporate sponsor, please contact us and we’d love to talk to you about how you can help and the opportunties to get your logo on the website or on the t-shirt.
We’re running on May 21st at Grant Park in the generacetion race. Generacetion is supporting two charities, Kate’s club and SCS, which help children who have lost a sibling or parent (which affects many families with SMA) and senior citizens in Atlanta. By signing up to run in the race, you’ll be supporting Kate’s Club and SCS with your registration fee. To help raise awareness for SMA, everyone running on our “team” is going to wear a special Skylar/SMA t-shirt on race day which you can keep and wear in the future. If you want to raise money for Skylar and/or SMA research, you can tell your friends, family and co-workers about Skylar and SMA, asking them to sponsor your run by donating at 10kforskylar.com.
You can register online and sign up for the 10k or 2k fun run. You will get a confirmation email and a “fundraising” website link – this is for the Kate’s Club and SCS, not for SMA or Skylar. Find out more information about the race and the 2 charities for Generaction at www.generacetion.org. Please fill out the contact form below if you are planning to run with us and include your shirt size and we will let you know where we are meeting on race day and we will distribute shirts to help raise awareness for Skylar and SMA.