Thursday, July 27, 2023 | 7pm- 9pm
1457 N. Halsted St.
Chicago, IL
Join us for an evening of music with Wedding Banned, food, and fun at Sounds of Summer.
“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 4 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.
We are so fortunate to qualify, as an SOD1 family, for a new drug called Tofersen, that was finally FDA approved April 2023. It's been working amazingly well for our family, and we are beyond grateful! While this is HUGE news, donations are still needed to further the science towards a CURE for our family and so many others. We don't have time to wait.
ALS is an underfunded and expensive disease. Tofersen treatments alone will need to be administered every single month, via lumbar puncture, for the rest of their lives, until a cure is found.
We MUST find 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 much research, we feel the best way that money can be spent is with ALS TDI. Their focus is research - with 87 cents for every dollar donated is put directly into the research. They are fully committed to finding a treatment as soon as possible. This is our focus.
Thank you for your support!!