Our Bill is scheduled for an introductory Hearing on Tuesday 6/13/17. Its a formal introduction where the committee will vote to include the Bill for consideration and later discussion with testimony. Its one of the first hurdles. So, we need our supporters to call or write the Committee members and ask for their support.
Its important to remember that you don’t have to live in Pennsylvania to write or call. We just want the committee members to hear from lots of people asking them to support the effort.
Below is a letter written by Kate Chalfin that we offer for you to send. If you’re able, copy and paste it into your email to the Committee members, and write in a sentence saying why you are writing. It matters. If you don’t have time to contact all, please focus on the Committee Chair: Lisa Baker and also send a thank you to Senator Scavello.
Thanks for your support
The emails are here followed by the contact request (sorry for those have to be done one by one):
http://www.senatorbrooks.com/contact/, http://www.senatoraument.com/contact/, http://www.senatoraument.com/contact/, http://www.senatorscotthutchinson.com/contact-me/, http://www.senatormensch.com/contact-me/
Dear Senator Baker and HHS Committee Members:
Letter from Kate Chalfin of West Chester PA.
The other day I was listening to a podcast and heard a statement that struck home to me. The story was about a young man who suffered a spinal cord injury (SCI), and was just beginning to understand his changed body. The narrator of the story identified that “even the most basic version of survival was going to be completely exhausting.” To me that describes so accurately what life is like for individuals living with SCI. It helps describe why the communities of approximately 37,000 Pennsylvanians living with spinal cord injuries are so often overlooked. The struggle to stay healthy, to manage their bowel and bladder functions, to adjust to their new normal, and to maintain a job (if they are lucky enough to have one), means that there is often not much energy left to advocate for themselves.
But we are here to tell you that there is a real need to increase funding for more SCI research. Pennsylvania has a wealth of scientists and they are working on some very interesting research for SCI treatments. Thee science and the talent is here, but the lack of funding is limiting Pennsylvania’s potential to be a groundbreaking leader in this field. The potential benefits of a small amount of seed funding for SCI research not only include the obvious life improvement for the 37,000 Pennsylvanian SCI survivors, but a reduction in the cost of care, which is over $1 billion annually born by the state, and the attraction of medical device companies, pharmaceutical companies, and esteemed neurosurgeons to our state. This funding would show Pennsylvania’s world-renowned hospitals and research facilities that the Commonwealth supports their efforts.
But those are just the economic facts. The most important thing is the sense of hope that will be given back to those living with SCI. It would give hope to my 39-year-old husband who was injured seven years ago in a steeplechase racing accident and is paralyzed from the chest down. It would give hope to our fellow advocate David, who is the father of two young children, and would benefit from a greatly improved quality of life through even the small change of regaining use of his hands. And it would give Senator Scavello’s constituent, 16-year-old Alex hope, who sustained a spinal cord injury during birth and would be able to start to envision a day where he could live independently when he reaches adulthood. This is just a small handful of stories that reflects the lives of so many Pennsylvanian’s living with SCI across our state.
Please support us by voting to approve the Senate Bill 31 Spinal Cord Disability Research Grant Program, and add to the 12 existing State Research Investment programs across the US (most recent $6 million Research Fund in MN) so that we can help fund the science that will so greatly improve the quality of life of those living with SCI.
Sincerely, The PA Cure Advocacy Network: Kate & Jake Chalfin, Melissa and Alex Pitts (Nazareth), David Zacks (Erie), Leon Ford (Pittsburgh), Matthew Rodreick (from Radnor), Kenneth Ryno, Michael Pellicano (Carbondale), Ben Stear (Philadelphia). And: Dr. Angelo Lepore (Jefferson Hospital). Ron Siggs (VP of Development at Magee Rehab), Mark Chilutti (Assistant VP of Development at Magee). Dr. Michael Selzer (Temple University), Dr. Michel Lemay (Temple), Dr. George Smith (Temple), Dr. Young-Jin Son (Temple), Dr. Andrew Spence (Temple), Dr. Shuxin Li (Temple), Dr. Ralph Marino (Jefferson), Dr. Ted Taraschi (Jefferson), Dr. Karen Greenwald (Pitt) Dr. Therese Johnston (Jefferson), Dr. James Harrop (Jefferson)
Supported by: Unite 2 Fight Paralysis and Get Up Stand Up 2 Cure Paralysis.