But, be assured, it's going to be a difficult challenge without their help. It's important when working with other families that they be requested to report back to you with the results of their efforts. This does two things. First, it allows you to keep track and monitor the temperature of the legislators regarding the bill. Secondly, if you encounter specific concerns or questions being raised by the legislators, you can attempt to address those issues within the testimony during the hearing.
Some legislators return to their district offices on weekends while they are in session.
If you can, ask the families to attempt to meet with their representatives in their offices if at all possible. Take some pre-mixed formula and a variety of foods with the pricing marked on the packages. Give their personal history with PKU and the problems that they've encountered. If you are not able to speak with them personally, be sure to give your best effort in educating their aides. Tile aides can often be very helpful and they do talk among themselves.