[julie-l]

Alyssa – we were just at our MDA clinic visit.  Our neurologist is trying very hard to get Risdiplam now so when it is approved, we can hit the ground running.  The adult MDA clinic hospital would not approve Spinraza so the adults here were basically out of luck.  There is a Pain Clinic facility that started administering to adults, but I have not heard how it’s going.  My 2 adult “kids” with Type II started Spinraza in Dec 2018.  My daughter had to quit after the 4 loading so she is anxious to get on the oral med.  My son is still receiving Spinraza at Children’s, but honestly, we have not seen ANY remarkable improvements but is maintaining.   He just received his 8th dose last month and has actually begun to feel weaker so he too would like to switch to the new drug.   Spinraza just might not work for everyone.

As for risdiplam – our neurologist said you need to be off of Spinraza for 4 months before you can begin the new drug.  So if our son wants to switch, she said he would need to skip his next dose in May and could not begin the oral med until late summer.   Not sure if that’s the true fact on how it will work, but will find out closer to the date once the drug is approved.