"SCRF4C
THE SPINAL CORD RESEARCH FOUNDATION 4 CHILDREN – WHERE HOPE AND CHILDREN COME TOGETHER ® ™
All of us at "The Spinal Cord Research Foundation 4 Children" (SCRF4C) would like to take this time to welcome you, and explain how this all started...
It all started when I had the pleasure of chatting with a women, getting to know her over a period of time, then getting to know her son. Her son was diagnosed with Syringomeilia. Not truly knowing this person but listening to her story. The boys Diagnostic, testing showed a Syrinx in his Thoracic Spinal Cord. I had no idea what this was, nor did she. I started doing my research, and so did my friend. Still speaking with her, and her son on the phone, getting to know his patterns, and his pain, along with her pain. Just trying to understand what all this was, and what it all means...
I Learned;
Being so full of life and an active, loving boy, he loved playing basketball, football, and baseball with his friends. When the news of his diagnosis came forth, it was sheer devastation. After receiving the news of this never before heard of diagnosis at 11 years old, I then learned from her son that he had always suffered from back pain, leg pain, numbness and tingling in his hands, migraine headaches and restrictions in movement. He turned to his Mother and said, "I just thought the pain was normal Mom." Hearing this for the first time, broke my heart.
She explained to me that there were nights when he couldn't sleep at all. She would spend hours rubbing his back. There was no sleep. And then the migraine headaches, sometimes so bad, that he missed school 2 to 3 times a week. The numerous, closed MRI's with and without contrast, caused him debilitating back pain afterward that would not cease for hours and hours on end. She was helpless. She said "watching your child suffer in front of your very eyes and knowing that there is just nothing you can do to help is sheer terror." For a Mother to be so deeply honest, and share her tears and emotions, I felt hopeless.
After her bringing her son to a number of doctors for opinions, she received no definitive answers. A chief and director of neurosurgery, specializing in pediatrics, handed her a 1 page document he printed off of the internet to read. It was a study performed on adult patients (18+ and over) about the diagnosis of Synringomeilia. She was told to just “watch” him and follow-up with the initial neurosurgeon who found the diagnosis. A subsequent, exhaustive research on her part into her son's condition she discovered that this is a spinal cord disorder with very limited growth in the way of research as it pertains to the pediatric spine. It was even more disheartening to find that my research yielded absolutely no studies being done for children. What was she to do and where was she to go? How many other children are suffering like this? How many other parents are making the daily decision, "do I eat today, or do I save that money for medical treatment?" -- Treatment not proven to help at all.
Her son was referred for physical therapy by an orthopedic doctor. After a few weeks of physical therapy, they discovered that the more exercise he did, the less pain he was in. After being discharged, however, it was absolutely impossible for her, a single mother with limited resources to provide the necessary equipment at home for him to continue his treatment. Hopelessness and despair took its reign.
In honor of all children across the United States who are dealing with spinal cord disorders, this foundation is your refuge. The goal of our foundation is to build the first, fully integrated treatment and research facility ( all in one) in the United States dedicated to children, eventually spanning the globe.
The "Spinal Cord Research Foundation 4 Children" will be home to fully accredited physicians, physical therapists, counselors and researchers dedicated to improving the lives of all of our children suffering from any type of spinal cord disorder. Let us again look at the full picture. There is not one CHILDREN'S Spinal Cord Research and Treatment Facility in the United States of America, not a one. Although there is one in Canada, that doesn't help American children. There are also children's hospitals that deal in cancer and such. That has nothing to do with what we are planning. THIS WILL BE ALL TOGETHER -A RESEARCH AND TREATMENT FACILITY -GYM- PHYSICAL THERAPY -MEDICATIONS-AND HOPEFULLY SO MUCH MORE! I have also done more research, it has taken me a very long time. There are hospitals out there, there are spinal cord research centers like the Reeve's foundation, Shriners, and several others. But, none that are just for the children. Not the adults. A place where the children can come, have a personal doctor, have the equipment there, and a regiment to follow.
Our entire staff and sponsors have come together, to make the difference and to build this state-of-the-art facility for children. Now if you will visualize with me for just one minute. Your child walks into the fully integrated physical therapy wing, and sees other children working out with their assigned physical therapist and then sees the window. Behind this window stand several people, all in white. They cannot see the children, as they must not be disturbed, but the children can see them and watch very closely. They see microscopes, test tubes and the Doctors/Researchers behind the glass. The children can see them working to find the cure. We will have one of our nurses there, to explain to them what is going on behind the glass. As the children work relentlessly to get better, hope is re-instilled knowing that they are not alone. There is nothing more rewarding than for a child to have that hope and newfound joy overflowing in their hearts knowing that there will be a cure one day. We would also like a series of videos that the children can watch, and see the progress being made, from the doctors and our research crew. To have it explained in depth to there understaning.
Our dream is not too far off with your help and support. We need to spread this news far and wide. Not just your donations, but by word of mouth. Reignite the gift of hope into a child’s heart. If you know any child with a spinal cord disorder, let them know of The "Spinal Cord Research Foundation 4 Children.” I have had the pleasure of speaking to my friend and her son many times. He has his good days and his bad days. I wish I could tell you their names, but she has chosen to keep her and her son private.
If you have done your research, that's great. But for the people that have not. Please listen carefully. There is research that can be done on a child's spine from birth, until the age of 15. Then at that age the spine is considered an adult. There are many children out there who have limited time left until their spine sets. Our goal is to have this facility built within a year. Can we do that? With your help it is possible. Help us to help your children.
If you prefer to mail your letter via the U.S. Postal Service, address is: Spinal Cord Research Foundation 4 Children C/O Patricia Marshall or Gilbert Collazo P.O. Box #65, Peoria, AZ 85380
Please make sure to include in the letter, the full name of the individual / organization, the address, the specific amount to be donated and that the amount will be donated after tax exempt status has been confirmed. This will help expedite the process of Tax Exempt status. As we are still in the process of filing for our Tax ID, and the 501(c)(3) we thank you for your patience, your donations at this point will help us complete our task at hand. We will keep you updated on our status.
If you have any questions, or suggestions please send us a message. You may ask for Tricia, or Gil. PLEASE NOTE: If you would like to send me an email please feel free to do so Tricia Marshall, or Gilbert Collazo. If we can help you in any other way, please feel free to ask any one of us.
If you want to tell us your story, it would also help us, as we are trying so many different disorders out there. . If you would like to volunteer, we have many events on the horizon planned in Arizona. We can use the extra hands. We have many sponsors already, and many wanting to help make this dream a reality.
You may reach Tricia at 623-334-3910
You may reach Gil at 602-690-1146.
Check back frequently to check our events to be posted on the calendar. We are planning the World's Largest Bike Run, A walk-A-Thon at Westgate in Glendale AZ. We are organizing a trip to the zoo with the children. Concerts, comedy shows, Buffet dinners ; Tail Gate Parties not just for adults . Hike for your child, fishing trips, picnics, and we are taking names for a Children's Stand-Up Comedy Show Hosted By Bill Lackner!
Bill is an actor/comedian. We have had the pleasure of seeing him in action. He loves kids, and gives his all when it comes to kids and charities.... Please be patient, as we are so very busy with many events coming into play. I will list them as we get the dates set.
Thank you again, God Bless Tricia, Gil and Staff