My name is Amanda Sifford, and I am living with ALS associated with the SOD1 genetic mutation.

i’m the 14th person in the family to have ALS. My family, including myself having been volunteering for medical research since the early 2000 when we first became aware of how prevalent the disease was in our family. I was even fortunate enough to volunteer for the pre-fALS studied that was used to help identify bio markers and eventually lead to the QALSODY treatment. I wasn’t an eligible candidate for the QALSODY clinical trials because my genetic reputation is associated with slow progression initially. I will tell you that when it affected my diaphragm my breathing tanks in the matter of months going from a breathing score in the 90s down to 27 in a matter of two months. I believe I was two or three months away from death prior to starting the QALSODY treatments. I’m grateful that the drug has been conditionally approved by FDA going through to a remainder of clinical trials. It’s the only reason I’m alive.

I currently receive intrathecal treatments every 28 days, but my doctors recommend increasing the frequency to every 21 days to better manage my symptoms especially the bulbar area muscles. My doctor is hopeful that with the increased dosing my throat muscles will improve. I’m hopeful I can continue my career, but only if I get tje 21 day treatment regimen. My throat muscles aren’t responding to the treatments the way my other muscles have responded. I’m alowly losing the ability to talk and swallow. This will cause me to go on disability, something Which dread. I love my career as a school psychologist and being able to help students. I know how fortunate I am to be a candidate for QALSODY. I do not take a single day for granted. In addition to these treatments, I undergo chemotherapy four times a year to help control inflammation caused by the QALSody medication. Taking time off work, (hey I'm thrilled I'm still working!) and traveling for treatments 3 hours away adds to the financial burden. Unfortunately, my insurance does not cover all of my medical expenses, and I need three additional treatments that are not covered, which has created a significant financial burden.

The funds raised through this campaign will go directly toward my ALS-related expenses, including the QALSody/Tofersen drug, treatment procedures, and the travel required for my care. Every 21 days, I hopefully will travel to Miami for treatments and clinic visits, which also means taking time off work.

I am incredibly grateful to have access to QALSody/Tofersen while it is still in clinical trials, and I feel honored to participate in research that is not only saving my life but also paving the way for others with ALS to have hope and treatment options. Having lost 14 family members to ALS, including my dad, grandfather, aunts, uncles, and cousins, I know firsthand how devastating this disease can be. My medical team believes that by increasing my treatments, my throat muscles—currently causing issues with swallowing and speaking—are likely to improve, just as my other muscles have. Unfortunately, because the drug is still in clinical trials, insurance will not cover the extra treatments until more research is available. I am humbled to ask for financial support and deeply appreciate any donation, no matter the size. Thank you for your kindness and support as I continue this journey.