Needs photos and parents signature for Bill to support PFS kids!

[Guest guest]

Hi everyone,

A while back there was a member on this listserve and her name is

Lori Todaro. She has been working very dilegently this year to try

and get legislation passed that would force insurance companies to

cover the cost of medications for children who were part of a study

at the NIH. Insurance companies currently have the right to say they

won't pay for medications that aren't deemed for certain diseases.

For example, some companies can say they won't pay for Singulair, if

it isn't prescribed for asthma or allergies ... so if the NIH has

your PFS child try this and it works, your insurance company could

deny to pay for it. Understand?

Well, here is the email I received from Lori today:

Today is an AMAZING day! Raise your hands in praise, pop the

champagne, shout from the rooftops! We heard from Senator Specters

office this morning and we receive wonderful news....our bill has

been drafted!! What does this mean? Well, a committee met and a

bill/law has been drawn up, will be finalized right away-and will be

up for a vote. The neame of this bill? The Nino Act of 2008. This ACT

will encompass ALL PEDIATRIC PATIENTS WITH RARE DISEASES being

dismissed from a clinical/research study at the NIH into Medicade

regardless of income. ALL children with rare diseases will be covered

under The Nino Act of 2008 and will get their treatment/therapies

under the guidlines they were receiving from the NIH. Do you fully

understand how HUGE this is??? I sure hope you do!!! Parents-you will

not have to fight to get your child the care they need and deserve-no

matter your income-your child will be covered under this Act as long

as they have a RARE PEDIATRIC ILLNESS!! This is everything we've been

fighting for and more.....THANK YOU to Senator Arlen Specter and his

staff- Myers and his team have been actice in moving this forward-

Senator Casey's office has Morna Murray supporting us and believeing

the best in helping children having the quality of liefe they

deserve. When this bill comes up for a vote, which will be before we

know it-I need all of your support!!! My homework over the next 10

days-because in that time the drafted bill will become a final

product and will get the signatures/support of Sen Specter and Sen

Casey, I have to create a petition and get as many names, signatures,

photos and names of States of families with kids who have rare

diseases. I NEED YOUR HELP!!!!If you are one of these families-PLEASE

send me your signature, with a photo of your child, the name of your

city and state and your childs disease-If you are someone out there

in carepage land who believes in this bill and supports what we are

trying to do-please send me a note with your signature in support.

Remember, we never thought we'd be in this situation either-PLEASE

get these to me RIGHT AWAY!!! We have HUGE Mountains to move and we

are on our way-this is AMAZING!!!!!!!!!

Blessings to all....

I will keep you posted as news pours in...we are hoping for some

National attention-SPREAD THE WORD!!!!!

Always believe my friends-anything is possible if you believe!!!

Love, Lori

Please send to: Lori Todaro 605 Roxbury Rd. Newville, PA 17241 THANK

YOU!!!!!!

So please, if you can help her out do so and quickly!

Thanks!

Heidi

Mommy of Mason