My father was recently diagnosed with ALS. Trying to gather as many resources as possible, we were fortunate to hear about Synapticure via Twitter. We met with our care coordinator within a week of reaching out, who walked us through the wide-ranging services and enrollment process.
Soon after meeting with our care coordinator, we had our first meeting with our teleneurologist. Being able to meet with an experienced physician virtually was invaluable as it is becoming more difficult to travel. Plus, it was nice not having to figure out the logistics of getting to his clinic! The teleneurologist was personable and provided thoughtful answers to all of our questions about my dad’s current symptoms. We will be meeting with him again next month to talk about other treatment options and clinical trials he may be eligible for.
Our family has also met with the Synapticure Insurance Navigator, who advocated for us and helped us access VA benefits. She checked on the status of our claim and moved things along so that my dad could start receiving benefits. She is also trying to maximize my dad’s current health insurance coverage for home care. The Insurance Navigator has had many exchanges with our insurance company to try and appeal its rejection of oral Radicava. Thankfully, the appeal was approved and she is now helping us access the medication as quickly as possible. She has spent a significant amount of time on the phone communicating with our insurance provider so that we could focus on caring for my dad.
Lastly, the Synapticure team referred my dad to a well-established ALS clinic, so that he could also be seen in person. The medical assistant collected and sent all of my dad’s medical records to this clinic and facilitated the entire referral.
We greatly appreciate all of the help and support that Synapticure has provided to our family. We are sharing our experience so that other ALS patients and families could benefit from all the wonderful services they provide.