Cerebral Palsy Family Network Photo Contest Winner

Photo Contest Winner: Life with Halyn

By Jamie Strickland
View similar blogs.

This is Halyn Jean Strickland, of Roanoke Rapids, NC, and her daddy, enjoying a relaxing day at the beach. Our story begins on November 10, 2006. Halyn was born on this date at only 26 weeks gestation. She remained in the NICU from that day until February 8, 2007. She had a grade 3 IVH at birth, and she also has hydrocephalus. At 1 yr. old, she had a VP shunt inserted in her head to drain any excess cerebral spinal fluid from her head, into her abdominal cavity. She was diagnosed with spastic CP at 2 yrs. old. The CP affects her lower extremities for the most part, and slightly affects her right arm/hand as well.

From the day she came home from the hospital until her third birthday, she was fortunate to receive help from an Early Intervention Program in our area. This group helped with finding Halyn great physical, occupational, vision, and speech therapy programs. Since turning 3, she has enrolled in a special needs pre-k and kindergarten, where she continues to receive physical and vision therapy at her school.
We also incorporate physical therapy at home into her playtime. She enjoys when we lay on our backs and pretend to be in a bicycle race. This helps strengthen her legs and stretches her hamstrings. I also do my own version of hippo-therapy, by getting down on all fours and having Halyn straddle and sit on my back as I go back and forth across our living room imitating a horse. Since Halyn’s CP affects mainly her legs, her grandfather came up with an idea where the two of us would hold a broomstick in our hand and have Halyn hold on in the middle of the broomstick and carefully walk along with us. This allows Halyn to try to walk with her hands held midway of her body, rather than having her arms up in the air by holding our hands. Believe it or not, this actually does seem to help and it helps our backs too, being that we don’t have to lean over and walk along with her as she holds our hands.

Another thing that we have recently discussed was Botox treatments. We have had a consultation, but the doctor didn’t want to go forward with them at the moment and has put her on a medicine called Baclofen. She has been taking it for about 6 months now, and in my opinion, it hasn’t really helped a lot, and I am searching for another doctor that would recommend the Botox.
In addition, Halyn has a gait trainer and a wheelchair. She also wear AFO’s (leg braces), and soft knee braces, called snoopies, that keep her legs straightened out during sleep. I have also sought out others that are going through the same thing for ideas that can help improve the quality of her life, like the Cerebral Palsy Family Network. I enjoy reading the posts from others and have become friends with many.

Columbia Launches Center For Cerebral Palsy Patients

October 30, 2012
By V.L. HENDRICKSON

When Debby and Peter Weinberg’s son, Henry, was diagnosed with a rare form of Cerebral Palsy when he was 3 months old, the family was lucky to able to turn to the doctors at Columbia University Medical Center for care. But, as Henry approaches adulthood, he has far fewer options for care.
“Ninety percent of CP patients now live until adulthood,” Mrs. Weinberg said. “That wasn’t always the case. Now there’s a big population of patients living to adulthood and no one was focusing on them. The focus was always on pediatrics.”
“Cerebral palsy is a little bit of an orphan disease, and hasn’t attracted a lot of attention over the years,” said Mr. Weinberg, who is a founding partner at Perella Weinberg Partners LP, a global financial-services firm. The center is a collection “of efforts to help people with CP with their issues.”
Patients with cerebral palsy, a group of disorders that affects speech, movement and cognitive function, often need special treatment from doctors experienced with the range of complications that can arise from even routine operations. Mrs. Weinberg relayed the experience of one adult CP patient, in need of hip surgery, who was referred by an orthopedic surgeon to a pediatrician who had experience with CP. The pediatrician, of course, wouldn’t operate on an adult. Fortunately, the patient was able to get care at Columbia’s new center, which has already begun reaching out to the CP community.
In addition to providing treatment for patients of all ages, the center, led by Dr. David P. Roye Jr., the St. Giles professor of pediatric orthopedic surgery at CUMC, will also help coordinate care for CP patients, educate their families and caregivers and conduct research. Doctors will study the impact of various treatments, to see if they make patients “more mobile, more independent, more pain free,” said Mrs. Weinberg. “If they give patients a better quality of life—that’s the goal.”
In addition, a patient registry of CP patients has been established at the center, providing valuable data for doctors and researchers all over the country. “The patient registry is in its infant stages, but it’s already the largest in the country,” Mrs. Weinberg said. “Lack of data has always been a problem.”
Henry, the Weinberg’s son, is now 17 years old and thriving in high school. But the family, who live in Greenwich, Conn., is relieved to know he will continue to have access to the best doctors as he becomes an adult. “There’s a lot of anxiety on the part of parents as to where their children will get care,” Mrs. Weinberg said.
The new center, a celebration of which was also scheduled for Tuesday, but will be rescheduled because of inclement weather, will help alleviate that anxiety for families all over the New York region.

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Dr. James Klausner: Conductive Education

September 12th, 2012
By Danielle Torrent
Sign up for our weekly newsletter!

James Klausner wasn’t looking for an additional career when he decided to start a rehabilitation program for kids with Cerebral Palsy. He already was quite busy with his day job as a lecturer at University of Florida and a physicist. It would be enough to nominate him for the Spirit of Gainesville award for his work as a professor. But he wanted to help kids in Gainesville, kids just like his son, who passed away at age six. He wanted to make them mobile, more independent, educated and accomplished. Hopefully, he would help them walk. In 2006 he started The Gainesville Conductive Education Academy. With a program modeled after the world famous Peto method, James Klausner took on a second day job without pay. He never turned a child away and as the head of The Jordan Klausner Foundation created in his son’s memory he tried with all his might to balance his need to help the local community with ever limiting funding to keep the facility running. Conductive Education is a method very little known in America, but quite popular worldwide, especially in the 1980′s. It doesn’t enjoy the financial support of insurance or the recognition of the US medical community. Conductive Education was developed in Hungary in the 1940′s. The theory behind was that people with neuromuscular disabilities can learn and improve through routines, movement and repetition. James wanted for the parents in Gainesville to have it as an option, to have the information and then make choices. He created an Academy that was free for most, affordable for the rest and he persuaded a Hungarian conductor, Kata to join his cause.

Dr. James Klausner

25 years ago I was just like the kids James Klausner has helped in Gainesville. I know what it did for me. I know what it’s like to fight with limitations of your own body only to raise above it and get better. Today I’m an attorney. Cerebral Palsy never goes away, of course I can see, but you can limit the way it affects you. That’s what James Klausner tried to do, against the odds, by bringing the approach that helped countless kids to Gainesville. To give them the gift of mobility. And also to start the discussion about the education and therapy choices in America and how we view Cerebral Palsy today. He didn’t make CE widespread, but he got his foot through the door.

This is our last chance to honor Dr Klausner’s efforts. After years of struggles the school has shut down this year. I know it was not an easy decision for him. It’s not that Cerebral Palsy is no longer a concern in Gainesville, but the logistics, the finances, the economic crisis we all live in, finally became too much for this one person, who tried to make a difference. He sacrificed a lot of personal time, energy and money. He thought of others first.

Last year I was nominated for the Spirit of Gainesville award, for my work with the school. But James is the true champion of Conductive Education. I’m just a success story. He has inspired me to help others like me. At the school little miracles happened daily. Yet, the media mostly ignored him. This is our chance to correct it. The school has closed but his efforts were not a failure. Not to his students, his other students, those who now walk, speak and move. Not to me, as I build by career around disability law issues and all the others he has touched. The school has closed, but the Foundation will continue, James assured me. For Jordan and for other kids in Gainesville.

Second Nomination

By day, James Klausner plays the role of what many people would call a rocket scientist. A professor of mechanical and aerospace engineering at the University of Florida, his research in thermal fluid sciences has landed him positions on panels for NASA and the National Science Foundation, and resulted in numerous awards and recognitions for his theoretical and experimental work on heat flow transfer. But the rest of the time, Klausner is focused on improving the lives of children with neuromuscular disabilities in Gainesville and surrounding areas.

In 1999, he established the Jordan Klausner Foundation in memory of his son, Jordan, who was afflicted with cerebral palsy. The foundation is a 501c3 nonprofit run primarily by volunteers that offers a range of services to the disabled community in North Central Florida, including educational opportunities for children, advocacy and legal services. It is mainly supported by parents and relies on grants, donations and McKay scholarships for funding. In 2006, Klausner opened the Gainesville Conductive Education Academy, a Florida charter school that combines rehabilitation and education to help children become more functional and independent. The key to Conductive Education is having children follow carefully designed scripts of exercises to make them stand, move and walk with the use of specially designed furniture that also serve as rehabilitation tools. The facility applies the therapy method developed in Hungary in the 1940s by Andras Peto. Over the decades, Peto’s Institute in Budapest has become a popular destination for Cerebral Palsy parents from all around the world, with many witnessing great progress in their children’s walking, talking and other functionality skills. The Gainesville Conductive Education Academy’s instructor, Katalin Szcoboda, received training for this method in Hungary. The school’s goal – unlike the outcome of many public schools, which results in disabled children becoming dependent on wheelchairs and classroom aides – is for children to become as independent and as functional as they can be. The Jordan Klausner Foundation’s motto states: “Helping special children help themselves.” The school operates year-round, providing otherwise unavailable educational options for North Central Florida’s population of children with disabilities and their families, with the ultimate goal of incorporating students into the public school system. Students have commuted from Orlando and as far north as Georgia to participate in the academy’s summer camp, as there are no other Conductive Education facilities available in the area.

Cerebral Palsy is an umbrella term for a number of neuro-motor disorders involving brain injury at birth or during pregnancy. An estimated two-to-three live births per thousand are diagnosed with the condition, with some studies suggesting raised rates in recent years. It affects children in all countries and all social groups. The condition mostly affects walking, control over limbs, balance and speech and in most cases, renders the body spastic. James Klauser has devoted an immeasurable amount of time and personal sacrifice to get the foundation and school off the ground, organizing fundraising events, applying for Federal grants and ensuring the students have a safe, welcoming facility to attend. He is committed to helping kids in the community and building a sustainable organization that will be able to help generations of families. For more information, please visit www.jordanklausnerfoundation.org.

Sign up for our weekly newsletter!

Toxic Baby Shampoo Report Stings Johnson & Johnson

By Elisha Hawk

The eyes of Johnson & Johnson executives must be stinging from today’s disclosure that its Baby Shampoo sold in the United States still contains a chemical that releases formaldehyde—a known carcinogen—even though the ingredient has been removed from shampoos sold in other countries.

A report issued by the Campaign for Safe Cosmetics, a coalition of some 50 non-profit health and safety groups, says its latest analysis of J & J’s Baby Shampoo shows the product sold in the U.S., Canada and China still contains quaternium-15, a chemical preservative that kills bacteria by releasing formaldehyde. Formaldehyde was recently added to the U.S. government list of known human carcinogens

The Campaign’s report triggered a statement from J&J that it is phasing out its products with formaldehyde-releasing chemicals in the U.S. and elsewhere. But according to the Campaign, the company already sells formaldehyde- free shampoo in Denmark, Finland, Japan, the Netherlands, Norway, South Africa, Sweden and the U.K.

“Clearly there is no need for Johnson & Johnson to expose babies to a known carcinogen when the company is already making safer alternatives. All babies deserve safer products,” said Lisa Archer, director of the Campaign for Safe Cosmetics at the Breast Cancer Fund.

We agree. Why the delay for U.S. babies? Is it profit? According to the Campaign, J & J’s “organic” brand of its baby Shampoo contains does not contain guaternuum-15 – but it costs twice as much.

I find it reprehensible that a corporation would so callously put infants and small children at risk to sell a little more shampoo. Johnson & Johnson’s reputation is on the line. It should immediately recall all its Baby Shampoo and any other products containing cancer-causing ingredients from around the world and replace them with safer alternatives.

Elisha is a attorney with Janet, Jenner & Suggs and focuses her practice on defective products liability and holding corporations responsible.