“To accomplish great things, we must not only act, but also dream; not only plan, but also believe.” - Anatole France 

ALS has been a part of our family for over 100 years. It has taken the lives of 22 family with 3 more fighting the fight every day. ALS not only affects the patient but all of the family. We have lost grandparents, parents, siblings, uncles, aunts, cousins and their children to this disease. Some have lost their lives as young as 26 while others are much older. the average life expectancy after the diagnosis is 3-5 years. 

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 the time to wait. 

ALS is an underfunded and expensive disease. And, Tofersen treatments will need to be administered every single month, for the rest of their lives, until a cure is found. We NEED a CURE!

Our 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. 

After researching, we feel that the best way that money can be spent is with ALS TDI. They are fully committed to finding a treatment as soon as possible.