About a month ago, Rob, Scarlett, and I were headed over the Golden Gate Bridge in our glamorous silver mobility van. Alcatraz Island sat to our right, and city views rose behind us, but I always prefer to look left, out at the ocean and the world that never seems to end. I was singing along with my Napster playlist, which was streaming The Lumineers. I love to sing in the car, even though my voice is now much softer than it used to be, but my singing served another purpose as well, to regulate my breathing. We were headed to a friend’s apple farm in Sebastopol for the day, and although we had brought my BiPAP with us, I was hoping not to use it. I have no idea if the singing actually helps in any way, except perhaps to irritate Rob, which is good enough for me. Just kidding, he loves it when I sing (I tell myself regularly.)
The apple farm is owned and run by the family of one of Scarlett’s classmates. We visited for the first time last fall, a trip that was special in a lot of ways, but in particular because the house had previously been owned by a woman whose husband had ALS. That means the home is entirely accessible, and that’s not something we encounter very often.
There are 39 families in Scarlett’s first grade class, and everyone was invited up to the farm so that each girl could plant an apple tree. They worked together to decorate beautiful wooden benches with their names and their graduating year, Class of 2024. They drank freshly pressed apple cider, and everyone enjoyed a picnic lunch on the farm.n It was a beautiful day, and one of the main purposes of the gathering was to raise money for ALS research.
I simply can’t say enough about that. About the day, about this community that we have become a part of, full of amazing families who have embraced us and our situation, and in many ways have made it theirs. That this day was not only about the community, but also about ALS, just made me feel so full of hope. There is another family in our class who is affected by ALS, one of the girl’s grandmothers was recently diagnosed with bulbar onset. I know it’s a rare disease, but from where I’m sitting it certainly feels quite prevalent.
Our class has really taken on this cause. At the beginning of the school year, our two room parents sat at my dining room table to brainstorm about what we could do as a group, and how we could help educate the girls and their families around this disease that would be progressing before their eyes. These girls have only known me in a wheelchair, and they’ve always treated me just like any other mom, but I’m in a changing body, and they are observant kids. They’ve already had 1 million questions over the past two years about my situation, and about what will happen to me. I’ve always tried to answer honestly, although sometimes you don’t really know what’s appropriate to say to other people’s children about your terminal illness. I like to keep things light.
I love these girls. I think Scarlett is in such a wonderful place, and I know that this community will continue to be really beneficial for Scarlett and Rob throughout the years to come.
The money that her classmates donated will go toward funding a drug that ALS TDI has developed, a drug that they say is the most promising they have ever tested. If all goes well with funding and manufacturing, the drug will be ready for human clinical trials at the end of 2018. It’s a long way away, and I certainly wish that science was faster, but this is good news. The drug, which is called AT-1501, extends life span, delays disease onset, improves body weight and decreases inflammation in the nerves and spinal cord in both ALS and Alzheimer’s Disease. TDI’s lab has reproduced this data consistently and believe it to be one the the best candidates ever developed.
It takes a lot of money to get a drug into trial. In this case, ALS TDI needs $11 million to get to the next step, and more like $30 million to get the drug all the way through trials. Those are big numbers, and there’s only so much that individual communities can do. But ours has stepped up in a way that I never would have imagined, and I am beyond grateful for their support. As I’ve said before, ALS will be cured. And when those girls go back and visit their apple trees over the years, I hope they know that they were a part of that cure.