Hello from the Pontes Family! We are excited to be continuing our journey in Rob’s ALS treatment. He will soon undergo an experimental treatment and we are so hopeful once again. As you may know, in the last year Rob has been living at a rehab hospital in New Bedford, MA. Insurance has decided to stop paying for him to be there. Medicaid has not been approved, however, Medicare has picked up a few odds and ends for his stay there. Rob still has outstanding medical bills in the thousands of dollars while he waits for his Medicaid coverage and this treatment is not covered by insurance.



Here are a few updates on his progression from this devil of a disease: We are delighted that Rob can now communicate better with the help of technology donated to him, but his speech is slurred now and it’s hard to communicate the “old-fashioned way”. Hard is an understatement. He now types with his eyes, yes, his eyes. Rob loves going outside in the sun when he can, in his wheel chair. Most people ask what he can do now. We say he can’t do too much. He can’t walk, he can’t move his arms, legs, fingers, hug or squeeze his kids, and the list goes on. What we say he CAN do is still joke and laugh. For that, we are happy. Each smile he gives is an indication that he, too, has hope for the future and for this treatment.

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