I am Connie Becker
a family member in a familial ALS family,
a family member of someone living with ALS,
a family member of someone we've lost to ALS,
a friend of someone living with ALS,
a friend of someone we've lost to ALS,
someone who cared for a person we've lost to ALS
My family has lost grandparents, parents, siblings, uncles, aunts, and their children to this disease.
ALS has been in my family for over 100 years and won’t end until there is a cure. My family carries the SOD1 gene, which has taken the lives of 20 members of our family with 4 more fighting the fight every day.
ALS not only affects the patient but all the family. I lost my Uncle Mike when I was 16. I had just gotten my driver’s license and couldn’t wait to drive him around in his wheelchair van. Although, I’m not sure how excited he was about that possibility! He was like a father to me, and nothing felt the same after he passed. I also lost two first cousins who were like brothers to me. It’s been hard at times, especially at the holidays and family events since they are no longer with us. And, while things will never be the same without them, they are remembered and missed always.
My family has lost grandparents, parents, siblings, uncles, aunts, and their children to this disease. My Uncle Bill was the youngest we’ve lost to complication of ALS. He passed at 26 years old, leaving behind 3 young boys, while other family were much older. The average life expectancy after receiving an ALS diagnosis is 3-5 years. As you can imagine, the toll this takes on everyone’s mental health, being in a familial ALS family, is unimaginable. For myself, it was easy to assume every stumble, twitch, cramp, etc., was ALS.
When I was younger, I used to think about the future and how ALS would look for me, based on the rest of my family. When would it start? Would it happen quickly? Or would I be delayed in progression? Would there be a cure or treatment by the time I needed it? Who else is going to be fighting this beast of a disease with me? How can I get married or have children until I know for sure if I have the gene? Sadly, if I were diagnosed, it also meant I would lose my Mom to this disease, too. She never wanted to know, so being diagnosed – positive or negative – ahead of her was not an option. So many thoughts running through my mind. It was overwhelming, sad, and frustrating at times. And, for me, it did change the course of “my plan” for my life.
As everyone knows, it’s beyond heartbreaking to lose so many we have loved. They were all amazing, kind, loving, caring people who were a huge part of our family, and even more to their immediate families. I’ve been asked so many times how my family deals with losing so many we have loved. Short answer – we don’t have a choice. For me, I (try to) only allow the pain and tears of missing them when I’m alone. There’s not a day that goes by that I’m not thinking of them.
To combat that, I try to focus on the cure and advocate for my family to get the care and treatment they need and deserve. That does help, but we must stay strong. We must fight for and celebrate them and all they went through to get us to this point, as well as our family living with this disease every day. My family has suffered too much loss, so the only choice we have is to find a way to put an end to it. My family NEEDS a CURE NOW. It’s well beyond time, not only for my family, but so many others fighting this horrific fight.
As we know, there currently is no cure. And, while we are so fortunate to qualify, as an SOD1 family, for a new(er) drug called Tofersen, it’s still a long process to receive it. Tofersen is possible now due to Expanded Access, but so much time and money are needed to allow our family to participate. We don’t have time to wait. My family shouldn’t have to worry that the treatment we’ve fought so long and hard for might not be a possibility due to finances/insurance. ALS is an underfunded and expensive disease. The Tofersen treatment will need to be administered every single month, for the rest of their lives, until a cure is found. ALS is enough to deal with… funding the treatment so my family can live shouldn’t be another obstacle.
My family has always been willing and fortunate to participate in research since it became an option. We have been studied all over the world and helped identify the SOD1 gene. The Genetics Observational Studies Tab on ALS Signal is a great resource for those interested in participating in research.