Lori Todaro

There is POWER in numbers....

Posted: 03/18/2008

Hello Friends-   We have received many petitions with all the signatures-thank you so very much!  I've also heard from many of you saying that you have personally received letters or calls acknowledging your emails and faxes-thank you!  I have been in and out of DC the last week or so and NEED YOUR HELP!  Here's what is happening...in the House-Congress, Nino's Act has received many co-sponsors!  Unfortunately in the Senate, we do not have any new co-sponsors.  We need Co Sponsors desperately!!  I need your help.  PLEASE take a few minutes to contact any and all members of the Senate Committee on Finance-if you visit our web site www.ninoact.org there is a link to your Senators site as well as to your Congressmen's site.  Just go to the Senate homepage and there is an option for Committees-go to Committee on Finance and the members are available along with their contact information!  If you are able to send out an email or make a quick call-PLEASE ask them to Co Sponsor Nino's Act, S.B.# 2629 as well as request that they hold a hearing.  If these Senators are bombarded with calls and emails they WILL respond!  They are on "Spring Break"for the next two weeks, however they have staff available!!  Many of the offices are very kind and nice to work with-there is POWER IN NUMBERS!  I know you are all very busy and appreciate all the help you can give.  Thinking back to when Nino first got sick I often thought I was too busy to add one more school volunteer thing-or too busy to play a game of checkers with one of the kids-too busy to help with meals for a sick member of our church-my oh my how quickly things change.  If a Rare Pediatric Disease does not affect you personally, please consider that it could affect your children's children, a friends, a neighbor, a Sister or Brothers child-please consider helping to get some attention for this if you can! Feel free to email or call with any questions or concerns.  We are working hard and will not stop until Nino's Act is passed and kids have HOPE for their future! Thank you one and all. Love, Lori and family. 717-386-1744 jtvtatat@aol.com www.ninoact.org

IMMEDIATE ACTION NEEDED TO HELP CHILDREN

Posted: 02/16/2008

On Friday, 2-15-08, in a surprise event, Pennsylvania House Representatives Shuster and Platts introduced a House Companion Bill to the Nino Act of 2008.  At this time, it is IMPERATIVE that contact is made to all the Senators and Representatives from across the nation in support of the Nino Act of 2008.  Time is of essence! A summary of the House Companion Bill can be accessed at: http://www.house.gov/shuster/content/press_room/2008/080215_Platts.pdf Information on the introduction of Senate Bill #2629 can be found at    http://specter.senate.gov/public/ What should you do? Contact your state's Senators and Representatives in Washington, D.C.  Let them know you support the Nino Act of 2008. Senators Contact info:   http://www.senate.gov/general/contact_information/senators_cfm.cfm  Reference Senate Bill #2629 House of Representatives Contact Info:  https://forms.house.gov/wyr/welcome.shtml  Reference House Companion Bill Nino Act of 2008 YOUR SUPPORT IS NEEDED TO HELP CHILDREN WITH RARE PEDIATRIC DISEASES RECEIVE MEDICAL TREATMENT.

Today is a great day!

Posted: 02/13/2008

The Nino Act of 2008 Senate Bill # 2629 was introduced by Sen. Specter and Sen. Casey today.  It is official!  This link provides some information on the introduction of the bill.   http://specter.senate.gov/public/  How can you help? Contact your Senator in Washington, DC.  Let him/her know that you want his/her support of Senate Bill # 2629.  Contact your House of Representative in Washington.  Ask for support of this bill when it comes in front of the House. Contact Sen. McCain, Sen. Obama and Sen. Clinton - tell him/her that you are looking for support of this bill when it comes for the Senate vote, as well as when it crosses the desk of the President. And, pass this message onto as many of your friends/family and ask them to support Senate Bill #2629 by contacting their Senators and Representatives in DC.  E-mails or fax is best.  Be sure to provide your name, address , phone, e-mail address for each person you contact. Senators Contact info:   http://www.senate.gov/general/contact_information/senators_cfm.cfm House of Representatives Contact Info:  https://forms.house.gov/wyr/welcome.shtml         Please show your support of Senate Bill # 2629 through action.  Thanks!

Calling all supporters of proposed legislation....

Posted: 02/12/2008

the "Nino Act of 2008" will allow all Pediatric patients with rare diseases currently being treated at the NIH to transition into home health care through the Medicade program regardless of income.  This is HUGE!  This will allow children to move out of the studies they are in and allow new patients to enter the study and receive the same benefits that children like Nino have received.  It's a win, win situation for everyone. These children currently in the studies, and are responding, can go home and be as normal as possible....families can stay together...and new children in desperate need of care/treatment, just as we were before our time at the NIH will have a place in the study which thanks to a flat NIH budget it's been difficult to do.  The NIH is an amazing place.  It gave our son and our family a chance at a beautiful life. You should see this kid play soccer! Friends, if you support helping children - contact your State Senators and your State Reps and tell them to VOTE YES for The Nino Act of 2008.  After it's introduced tomorrow I will have a Senate bill # for your reference!  PLEASE make those calls and make a difference!

FEDERAL LEGISLATION being introduced!!!

Posted: 02/12/2008

The possibility of helping hundreds of thousands of children with rare pediatric diseases just blows me away.  Because of a little boy named Nino and his three brothers and their incredible zest for life, I am inspired to do all I can to make a difference.  In the beginning of this journey, I thought of the things I'd never get to see.  I also thought about how tough our life was going to be-that's when I decided I could waste precious time and let despair consume me, or I could step up and take action.  Can you believe that tomorrow, Wed. Feb 13th Federal legislation will be introduced by Sen. Arlen Specter named for our son? It's amazing to me what is truly possible and how wonderful life can be in spite of adversity....just believe and ACT that's all it takes.  Please share your thoughts with me....