AMS Fulfillment takes to heart the relationship between business and community, and the relationship between employer and employee. When employees and friends of AMS are facing challenges, we use whatever means of helping that we can through word of mouth, social media and charitable events.
We have enjoyed a long-standing relationship with donors to AMS’ own SCV Sheriff’s Foundation & Search and Rescue Golf Tournament. One of those donors, a friend of the AMS family, is Teri Fox. Teri describes herself as wife, mother, philanthropist, advocate, President and Board Member of the Paul A. Hughes Family Foundation.
AMS has worked with Teri and her husband Michael on a number of projects, including the Hirshberg Pancreatic Cancer Foundation 5k – 10k Run/Walk. Teri also shares AMS’ passionate commitment to veterans’ causes, in particular veteran homelessness, so we know how Teri and her husband have gone to bat for others for a long time.
Like any one of us, they prefer to be the givers of help, rather than the ones who need to receive help. But life doesn’t grant us exemption from personal mountains to climb.
The family has been fundraising for gene replacement therapy for their son Sebastian, a therapy that could save his life and the lives of others who suffer from a rare and fatal disorder called Batten Disease CLN8. This regression disease is expected to take away Sebastian’s life before he turns 20.
So for Teri and Michael this is the real fight of their lives – to be able to raise the millions of dollars needed to provide cutting-edge gene replacement therapy for their son. They have decided to partner with anyone in the community who wants to help.
Sebastian’s story can be found on the website of the Sebastian Velona Foundation, which invites direct donations and guides the fundraising effort and the partnerships.
In telling the story, Teri says, “For several years, we searched the world for treatments or therapies to stop this disease. There was nothing. However, in 2016, we met the Gray family. They have two young daughters who suffer from Batten Disease CLN6, and they were instrumental in putting together a genetics team to develop a gene replacement therapy for children suffering from Batten CLN6. Their daughters both received the gene therapy eight months ago, and they are doing very well.
“Because it is relatively new, the treatment and research are extremely costly, time consuming and not covered by insurance. Nevertheless, we are determined to raise the money necessary to treat Sebastian and other children diagnosed with Batten CLN8. No one should have to suffer like this.”
Here at AMS we agree: no one should have to suffer like this. We encourage our employees, friends, and readers of this blog to visit the Sebastian Velona Foundation website, contribute if you can, and share the information. Teri is much loved by AMS and many others in the SCV community. One way we can thank her for her dedication to helping others is to help her son Sebastian have a chance at life through gene replacement therapy.