Category Archives: Blog

Your Voice Has Been Heard – National Institutes of Health Survey Results

By Paul Gross, Founder of the Cerebral Palsy Research Network

In April, many of you participated in a survey about medical treatments for your child. The survey was intended to help a group of researchers decide on the most important cerebral palsy treatments to study. The survey garnered more than 1,200 responses and your answers were very important in shaping the study questions.

The study, entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study,” was submitted on July 31, 2015 to the Patient Centered Outcomes Research Institute for funding consideration.

Your feedback indicated that invasive surgeries were the most difficult decisions to make in the treatment of your loved ones. If funded, the study will enroll 2,500 patients that are being considered for surgery affecting their legs.

Study on Invasive Leg Surgery & Options

There are numerous surgical treatments that are offered for the legs and there is no research comparing the outcomes of those types of treatments. Approximately 500 children will not go through any surgery and will receive less invasive medical treatments such as oral baclofen, bracing and/or physical therapy. This group will be the “control” to compare to the surgical treatment group. But, unlike other studies that randomize which treatments are selected, this study will simply observe which choices families make and measure the outcomes that they view as important for their child.

The lead principal investigator of this study is Dr. Richard Stevenson from the University of Virginia. There are 18 hospitals across the United States and Canada that will participate in this study. A more in-depth description of the study aims and participating centers can be found on the study website.

We wanted to thank the Cerebral Palsy Family Network for their participation in this survey.

Newborn’s Own Cord Blood May Be Key to Pediatric Stroke Treatment

By CP Family Network

"Our Cerebral Palsy Family Network (CPFN) has been following stem cell research and the impact it can have on children born with cerebral palsy."An FDA-regulated clinical trial will be conducted at the Florida Hospital for Children to investigate the use of a newborn’s own cord blood stem cells in treating a prenatal or perinatal pediatric stroke.

“Our Cerebral Palsy Family Network (CPFN) has been following stem cell research and the impact it can have on children born with cerebral palsy whether the CP is due to in-utero stroke or other brain damage. Because of our extensive reach within the CP community, our families have been asked and have participated in NIH studies including the funding of research projects. These clinical trials are critical to making a better life for children with neurological deficits,” said Giles Manley, Medical Director of CPFN.

The Phase 1 trial is the first to examine the use of newborn autologous stem cell therapy in the treatment of pediatric stroke. Autologous stem cell therapy is the use of a person’s own stem cells to treat a physical problem.

Following this Phase 1 trial, the goal is to develop Phase 2 studies that will further assess safety and measure efficacy in the use of autologous stem cells to improve common symptoms of this condition.

If you are interested in participating in this clinical trial, visit https://www.clinicaltrials.gov/ct2/show/NCT02460484

My Wonderful and Crazy Life with CP

By: Ashley Mohesky

Living with Cerebral Palsy is not easy, but I wouldn't change it for the world because every day I learn a valuable lesson.Hello! My name is Ashley Mohesky. I’m 22 years old and I have mixed cerebral palsy. Mixed CP is a combination of spastic cerebral palsy and athetoid cerebral palsy, which causes involuntary movements in the body. When I was born, I weighed 2 lbs 3 oz and my brain lost about 3 minutes of oxygen. Because of that, I am in a wheelchair and I use an iPad to communicate.

The doctors told my family that I was either going to be a vegetable my whole life or dead, but at the age of 3, I started a program in school called Preschool Program for Children With Disabilities. PPCD is a special education class for children with moderate to severe disabilities that are at the age for pre-kindergarten. Within a month of being in the program, my teacher realized that I didn’t need to be in her class because I was at a higher level than the other students. There was just one issue though, I couldn’t communicate other than pointing to what I wanted or needed. The school district decided to let me test a device called a Dynavox. After playing with it for a few minutes, I started typing out words and creating sentences without assistance. Once I got a Dynavox of my own, I was taken out of PPCD and transferred to a regular education first grade class. From then on, I excelled in every grade level.

After graduating from high school, I began my higher education and received straight A’s my first semester of college. I graduated in May with my associates degree in General Studies. I will transfer this fall to our local university to work on a bachelors in Social Work and a masters in Counseling to become a rehabilitation counselor to help improve the lives of people with disabilities of all kinds.

In the Fall of 2011, I started giving motivational speeches to give people hope when they are going through a rough time. My whole life I’ve been judged just by my wheelchair and communication device, and I want everyone to know that a person with any sort of disability is just like every other person that does not have a disorder. They just have more challenges and have to do tasks differently. By delivering my speeches and telling everyone about my story, I hope to diminish the stereotype of people who can’t walk, talk, or have other difficulties are intellectually challenged.

Living with Cerebral Palsy is not easy, but I wouldn’t change it for the world because every day I learn a valuable lesson, such as life is too short to not go for your dreams despite the setbacks, and to appreciate what you have because it could always be worse. To the outside world, CP sounds like a horrible disease because it prevents people from living their lives, but it’s not. In my case, CP only affects my ability to walk, talk, and eat/drink by mouth and I’m so incredibly grateful for it.

If you or your family member has CP, do not give up on yourself or them, and don’t be susceptible to pity. No matter what the challenges you face are, someone out there always has it worse than you do. Even though there are hard days, having faith and determination in every part of your life, you or your family member can get through anything in life that comes your way. “I can do anything through Christ who strengthens me” Philippians 4:13.

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