09/22/2019
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It may look like we have been doing nothing over the last year but what I have been working on is so huge it scares us so much we haven’t told anyone...
As most of you know we have tubies and are proud. Luckily we are in a situation with great doctors and insurance so all our medical supplies are considered medically necessary and affordable to us. Not everyone is that fortunate.
Imagine, as a parent, having to fight everyday just to feed your child. In the world we live in this should not be happening to our kids. These conditions need to be recognized as pediatric conditions, they need to be put on the medical necessity list for insurance. Well who better to be an advocate for this than Sophia’s Saving Grace.
In the past year We have been developing a war plan. We will need you help through out the battles and will keep you informed of our progress.
Battle one starts over the next two weeks. We are, excited with the connections that were made over the years, we were able to get meeting with a lot of the major suppliers for feeding and cecostomy tube supplies so we can talk to them about an in kind program. With these programs if the child has a prescription for supplies but insurance won’t cover them the supplier would cover some or all the cost. Although this is a bandaid on the problem it will provide immediate help for families.
This War is going to be a lot like when Sophia’s Saving Grace went to DC to speak to congress and got bills passed for pediatric intestinal research (who remembers that). Those tax neutral bills are still in place today and have help countless kids right here in your state and around the world.
For this battle, We will not be asking for a lot of monitory donations, what we need now is activism and support. Share this status. Invite everyone to follow us. Thank you all for your continued support. Stay tuned... and wish us luck..
