We believe in empowering those affected by paralysis with the best knowledge, resources, support, and community.
Here are two brief emails from a family that our information specialists in our Paralysis Resource Center have been helping -- Pat Durkin, who is living with paralysis and Sue Crawford, his fiancee.
MAY 19, 2011
Today, Pat, Bernadette (in charge of the foundation's information specialists), Ronnie (with our advocacy team), Pat's nurse Judy and I are meeting with Congressman Van Hollen. We are going to his office to thank him personally for his help in the appeal for Pat's DPS (diaphragm pacing system) and extended stay at Shepherd Rehabilitation Hospital last year.
In gathering my thoughts and reviewing emails for today's meeting, I remember the efforts of all you and the support you gave to us in seeking a healthier and stronger life for Pat.
Words really cannot express the gratitude for your concern and many efforts to make a difference in the outcome of Pat's recovery.
I am certain that Pat is breathing for most of the day (all of his waking hours) because of the efforts made to win the appeal from his insurance company for the DPS and a longer stay at Shepherd. He was told shortly after the accident that he would most likely never breathe on his own. Given a chance with the outcome of the appeal efforts -- he IS breathing on his own with the hopes to even wean off the vent completely! It has enjoyed the richness of having family, friends, his dog close by and being home. He now has 2 grandchildren and one to arrive shortly that he may have never met if not given that chance.
Thank you from the bottom of our hearts,
Pat and Sue
(Pictured: Ronnie, Congressman Van Hollen, his disability aid Char, Pat's nurse Judy, Sue, Bernadette.)
MAY 24, 2011
Last Thursday we had an opportunity to meet with Congressman Chris Van Hollen and some members of his staff.
Congressman Van Hollen along with others was helpful in winning my appeal to have the DPS implant and to extend my stay at Shepherd which has greatly helped in my ability to breathe on my own for most of the day. Ronnie Tepp along with Bernadette Mauro set up the meeting to personally meet and thank the Congressman. Bernadette has been with us all along this journey, a constant help and a dear friend. This was the first time we met Bernadette in person.
The Congressman was very easy to speak with and very interested in hearing my story as well as my concern for the number of serious injuries like mine that may be a result of the beach reclamation. He also showed concern for my health care insurance issues as well as recognizing the benefit of programs like the Christopher and Dana Reeve Foundation that provide support and information to families that experience a life changing event such as a spinal cord or brain injury.
Often we get disgruntled with our government policy makers and feel as though we have no voice. But my situation shows that one's voice can be heard by our government officials.
Pat and Sue
(Read what Bernadette wrote about this family and this visit!)
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