Topic

cerebral palsy

6 petitions

Update posted 1 month ago

Petition to Food and Drug Administration, President of the United States

Approve Hyperbaric Oxygen for Off-Label Conditions (Cerebral Palsy, Autism, MS, etc.)

Hi! My name is Christian Huber, and I have mild cerebral palsy. I am 18 years old, and I have written a petition! Would you please take the time to read, sign, and share it if you support it? It would help me, and so many others with brain injuries! :) Here is what you will see in my Description section: 1) Petition Updates 2) My Story 3) Agreement in Which Petition Signer Abides By 4) Collet Study Fraud Information 5) External Resources 6) References *Photo on main page of petition from the Colorado Center for Hyperbaric Medicine [3]* ___________________________________________________________________ UPDATE (10/29/2017): Eden Carlson and her family were featured on Megyn Kelly Today for her miraculous almost complete reversal of brain damage! :)  Please, FDA, approve this treatment for little girls like Eden! To see the show segment, click this link: https://www.today.com/video/meet-the-mom-whose-toddler-recovered-from-near-fatal-drowning-1064219715625  To view Eden Carlson's case report published by Dr. Paul G. Harch, one of the leading experts in hyperbaric oxygen therapy, click this link: http://www.medgasres.com/article.asp?issn=2045-9912;year=2017;volume=7;issue=2;spage=144;epage=149;aulast=Harch  To donate to the Eden Fund, click this link: http://www.hyperbaricmedicalfoundation.org/the-eden-fund To join the "Eden's Miracles" public Facebook group, click this link: https://www.facebook.com/groups/EdensMiracles/ To view the International Hyperbaric Medical Foundation's Facebook page, click this link: https://www.facebook.com/hyperbaricmedicalfoundation/ (This is the company that sponsors the "Eden Fund" initiative). In the segment, Megyn Kelly mentioned that Duke University is studying hyperbaric oxygen therapy.  Taking into account what NBC Medical Contributor Dr. Natalie Azar said regarding HBOT research, I'm looking forward to seeing the results of (hopefully!) a randomized, double-blind controlled trial from Duke University supporting the use of HBOT in brain injury.  Although, it's not really necessary for them to study this therapy more since there are "...1000+ articles of HBOT efficacy in 50+ peer reviewed journals" (David Freels).  But, if yet another study is what it takes for the FDA to approve HBOT, I'm all for it! Resource Used for this Update: http://davidfreels.com/atlanta.copywriter.pdfs/davidfreels.com.pdfs.html  _________________________________________________________________ Part 1 of Description (My Story): “I have officially diagnosed your son with mild cerebral palsy,” said the doctor.  At that very moment, my life changed, and so did my parents’ lives.  Because I shared my mother’s womb with my identical twin who died, I was born two months prematurely on October 8, 1999.  As a result, my lungs weren’t fully developed, and I didn’t take one necessary breath when I was supposed to, and my brain suffered because of that loss of oxygen. My parents were unaware at that moment of how important that one breath of oxygen would be to my developing brain, and they would have no idea how it would affect me in the future.  Although mild, my cerebral palsy is a life-altering developmental disability[1] that has affected me since the day I was born. Fast forward 18 years from the day I was born, and my brain still hasn’t changed.  I still need assistance with skills that are considered to be easy to other people, such as finding something in the house, getting a knot out of my shoe, or doing any other life skill or activity that you could think of.  I currently take occupational therapy (OT) to work on those skills, and activities such as cooking corn muffins and making orzo salad.  One of my occupational therapists actually showed me how to wash my mom’s car, since that counts as a life skill, too!  He even said to me one time: “Everything’s OT,” meaning that every life skill I do, whether it’s washing a car or making a meal, is considered a part of occupational therapy. In addition to taking occupational therapy, I also currently take physical therapy so that I can loosen and strengthen my spastic leg muscles, improve my balance and coordination, run around the neighborhood, play basketball, and jump rope.  Even though these therapies are fun, sometimes I think that they aren't really helping, since I still wake up each morning with tight muscles and a brain that doesn't always work the way it should. Now that I am getting older, however, I am entering the transition phase from high school to college and the workplace.  As a result, in two years I will no longer be in school with occupational and physical therapy.  Although my parents love me very much, I can feel tension and the sense of urgency between my parents and I.  My dad sometimes mentions my age when I can’t do something by saying: “You’re 17 years old, you should know how to do this by now!”  I feel as if he sometimes doesn’t know how to take a deep breath, and calmly explain to me how to do something in a step by step way.  My mom is also getting nervous about my lack of life skills, despite my academic abilities.  She said to me just recently, “We are going to stay at home and work on life skills all summer.”  I would love to work on life skills all summer, but I need to heal my brain so that I can learn and grasp life skills quickly and easily.  Before I can pursue a neurological healing journey, however, I need the FDA to approve a treatment that has been proven to work: hyperbaric oxygen therapy, and I need all of you to sign my petition. Agreement in Which Petition Signer Abides By: If you sign this petition, you agree: That the FDA should approve hyperbaric oxygen therapy for cerebral palsy and other off-label conditions That insurance companies should pay for hyperbaric oxygen therapy so that patients living with off-label conditions can receive it free of charge References (Part 1):[1] Surabian SR. Developmental disabilities: epilepsy, cerebral palsy, and autism. Journal of the California Dental Association. https://www.ncbi.nlm.nih.gov/pubmed/11484298 Published June 29, 2001. Accessed March 15, 2017. [3] TBI Therapy – Colorado Center for Hyperbaric Medicine. Colorado Center for Hyperbaric Medicine. http://www.cohyperbarics.com/tbi-therapy/ Accessed March 15, 2017. ________________________________________________________________ Part 2 of Description (Collet Study Fraud): Another reason why I created this petition was so that the Collet Study could be publicized as a fraud.  Read more about it below: Even though medical professionals say that cerebral palsy is incurable,[2] other doctors and medical centers claim that the contrary is true. One website that I visited, Colorado Hyperbarics Center, had an especially intriguing quote on it; one that made me just a tad bit angry inside. It said: “If HBOT could be delivered at the time of the initial insult, much of the damage could be minimized.[3] Unfortunately, clinical practice has not yet caught up to science and so it is extremely rare for a baby to receive HBOT at the time of a suspected birth injury.” The oxygen clinic also mentioned how virtually every abnormality that cerebral palsy is known for can be reversed, and how “It is no longer a question of whether HBOT is effective for CP, but whether a child has access to and reimbursement for HBOT.”[3] The information in that quote is very powerful, however some HBOT skeptics will do everything they can to disprove this treatment, including citing the famous randomized, double-blind study published in the Lancet in 2001 by Dr. Jean Paul Collet. Critics of the treatment say that because the official interpretation of the study claims that HBOT did not improve the condition of children with CP, HBOT should not be considered a viable treatment for cerebral palsy. However, Drs. Paul Harch, Michael Uszler and Pierre Marois all presented the facts about HBOT when they testified in court on August 9, 2006. The "petitioner" in the court case wanted Georgia Medicaid to reimburse him for treatments. Despite opposition, the testimonies of Drs. Harch, Uszler, and Marois all provided sufficient evidence to prove that HBOT can treat CP, and the judge ruled in favor of the petitioner. Georgia Medicaid is now required to reimburse in such cases.[4] Read more about the court case in citation [4]. One of the “principal co-authors” in the study, Dr. Pierre Marois, indicated during the court case mentioned above that Collet did not follow the recommended protocol for the study. This is because Collet did not include a control group (a group that did not receive treatment), along with the one group that received HBOT 1.75 times normal pressure at sea level, and another group that received air at 1.3 times normal pressure. Dr. Marois said that the physicians involved in the study knew that “…the improvements measured in this study were more impressive than all those measured with recognized therapies. Experience taught us there had never been that level of improvement in CP children prior to the study and it was dishonest to conclude it was attributable solely to a participation effect.” [5] Dr. Marois eventually goes on to say that even though he and other physicians involved in this study wanted to interpret the results of the study, “…Collet who had no knowledge or experience with HBOT or CP decided to interpret the results by himself. His conclusion was that the improvement was a placebo effect, an ironic finding since there was no true placebo group.” Dr. Marois says that “there was a big dispute over his interpretation of the results.” Dr. Collet, despite having a dispute with his colleagues, decided to send the article to the Lancet for publication, as long as all references to the word placebo were removed. Even after all the above evidence was provided in court to confirm Collet’s medical fraud, Dr. Marois drops a bombshell by saying: “Even when the article was published, Collet and the FRSQ, in the official governmental communiqués, falsified the title and the conclusion of the article to make everyone believe that the results of the study showed that the improvements were secondary to placebo effect. In fact, we have all the evidence to show that the improvements were the effect of both treatments administered with lower pressures.” [5] Wow. This just proves that hyperbaric oxygen works, and the critics of this therapy need to stop citing this fraudulent study to support their views. Aside from the court case, Dr. Collet has expressed during his speech at the International Conference on Cerebral Palsy in Quebec City, Canada on May 2, 2003 that (extra words such as “is” are removed for clarity): "...the hyperbaric center is in fact not a good practice because there was no regulation, and I wanted to prevent them to practice.” [6] Why does everyone believe that Collet’s study is credible, when he himself admitted that his primary goal during this study was to prevent hyperbaric oxygen clinics from practicing? In conclusion, the evidence above from the Colorado Center for Hyperbaric Medicine and Dr. Pierre Marois all prove that hyperbaric oxygen therapy is effective for the treatment of cerebral palsy. It can also treat many conditions, including: autism, migraines, cancer, dementia, anxiety, Alzheimer’s, multiple sclerosis, traumatic brain injury, and more. I, and others need to experience the healing benefits of this scientifically proven treatment! Let’s rally together in support of this therapy so that the FDA can approve hyperbaric oxygen therapy for the treatment of cerebral palsy and other off-label conditions! Also, let's demand that Dr. Collet edit his fraudulent study to promote the truth about hyperbaric oxygen and cerebral palsy (CP)! References (Part 2):[2] Cure. cerebralpalsy.org. http://www.cerebralpalsy.org/about-cerebral-palsy/cure Accessed March 15, 2017. [3] TBI Therapy – Colorado Center for Hyperbaric Medicine. Colorado Center for Hyperbaric Medicine. http://www.cohyperbarics.com/tbi-therapy/ Accessed March 15, 2017. [4]: "Collet / FRSQ case of medical fraud against children with Cerebral Palsy." Collet / FRSQ case of medical fraud against children with Cerebral Palsy. Quebec Association of Hyperbaric Oxygen Therapy, n.d. Web. 10 Apr. 2017. [5]: "Direct Testimony of Pierre Marois, M.D." Quebec Association of Hyperbaric Oxygen Therapy. Quebec Association of Hyperbaric Oxygen Therapy, n.d. Web. 10 Apr. 2017. [6]: Collet, Dr. Jean-Paul. "May 2nd, 2003 - Transcripts from Jean-Paul Collet's talk in Quebec." Quebec Association of Hyperbaric Oxygen Therapy. Quebec Association of Hyperbaric Oxygen Therapy, 2 May 2003. Web. 10 Apr. 2017. After reading Parts 1 and 2 of my Description, please see below for external resources relating to hyperbaric oxygen therapy. ___________________________________________________________________ External Resources: Conditions for HBOT (long list that I found!): https://oxfordhbot.com/treatment-indications/ Collet Study Fraud from the Quebec Association of Hyperbaric Oxygen Therapy: http://www.therapiehyperbare.com/en/index_en.html Georgia Medicaid Court Decision (in which father David Freels and his brain-injured son got reimbursed for HBOT treatment): http://davidfreels.com/pdfs/files/GeorgiaMedicaidDecision.pdf Direct Testimony of Pierre Marois, M.D during Georgia Medicaid Court Decision: http://www.therapiehyperbare.com/images/hyperbare/2006-06_georgia_medicaid_dr_marois.PDF David Freels (father of son with brain injury who was reimbursed by Medicaid for HBOT): http://davidfreels.com/ Medicaid for Hyperbaric Oxygen (HBOT) Yahoo Group: https://beta.groups.yahoo.com/neo/groups/medicaidforhbot/info?referrer=StemCells Mums National Parent-to-Parent Network (HBOT advocacy group): http://www.mums-network.org/index.htm Chamber of Hope providing free HBOT in Florida to families: http://cpfamilynetwork.org/resource-tag/free-hyperbaric-oxygen-therapy/ AND http://cpfamilynetwork.org/resources/chamber-of-hope-charity-providing-free-hyperbaric-center-for-children-inc-florida/ Nano-devices that cross blood-brain barrier open door to treatment of cerebral palsy, other neurologic disorders (scientific study): https://www.sciencedaily.com/releases/2012/04/120423104015.htm (Oxygen could be placed inside these dendrimers to cross blood brain barrier as an alternative to hyperbaric oxygen and ozone therapy)  

Christian Huber
544 supporters
Update posted 10 months ago

Petition to Andy Jorgensen (State Representative), Paul Ryan, Scott Walker, Stephen Nass, Robin Vos, Tyler August, Tammy Baldwin, Ron Johnson, Mark Pocan, President Donald Trump

Kids need Physical Therapy and Equipment!

My daughter Candice is an incredible and AWESOME young 11 year old with a fantastic laugh! She earns great grades, is in choir, is in Girl Scouts and our church youth group, she wants to be a teacher, loves her Green Bay Packers, loves to learn and loves reading! Candice has Cerebral Palsy. She was born with it. She has had twice a week therapy since she was about a year when they finally diagnosed it correctly. In spite of her disability she inspires those around her to be kind, to work hard, to laugh, to enjoy life and to never give up! Kids with Cerebral Palsy have until they are done with puberty to gain as much ground as they can to improve motor function. These kids are not only fighting the neurological disorder of Cerebral Palsy itself, they also have to fight while their body is making all kinds of puberty changes, weight gain from growth, and time! Her pediatrician, her Orthopedics Dr, her Special Needs Specialist, her adult friends, her peers, her Aides at school, her PT's, her OT's, and all the people who interact with her know she needs therapy. And Candice works hard, she wants to be independent! And yet the insurance company and the appeals court judges say she doesnt need it. Why because of money? Why can't they see this is about the quality for the rest of her life? Why doesn't anyone who makes these decisions see that standing her ground through all this is just as important as those periods of time where she is making her goals? Her physical therapy has been cut down to once every other week, that is less than maintaining and it shows! There are news stories all the time about adults ripping off the system yet where are the news stories about the effects that the state then cuts funds for these kids! I've contacted politicians, I've contacted news agencies, my friends have reached out to politicians including the President, and even to Ellen DeGeneres, but no one seems to be listening? This is not just about Candice, this is happening to kids all over our country with every insurance company, and they all need our help!! Please STAND FOR CANDICE and these kids! Please tell the insurance companies they MUST cover more physical therapy for kids especially while going through puberty! Please help me Stand For Candice!

Paula Shepard
149 supporters
Started 1 year ago

Petition to president Trump

Extend the International Age of Adoption to 18 for Children with Special Needs.

      There are  between 143  and 200 Million orphans suffering in institutions  throughout the world who have never had the love of a family or a chance for healing or reaching their full potential.  Of the orphans in Eastern Europe, only 20% will live to age 20 and many of the ones who do will turn to crime or prostitution for survival.       Every year, almost 15 million children turn 16 and "age out" making them impossible to adopt.  Many of these have special needs and will live their lives in run down mental asylums, where many die the first year. Children with autism, Down Syndrome, Cerebral Palsy, Limb differences..they do not stand much of  a chance in their countries, but in America, they could have the love of a family and hope.  No child should have to live in an institution without hope, nor face a sub par institution where their lives are endangered.     Last year, we found out about a 15 year old girl with cerebral palsy who we wanted to adopt, but our paperwork was received a few of days after her birthday and now, adopting her is hopeless unless this law changes,  and this has happened many times.  We are not the only ones.      The outcomes for these children who are not adopted is often catastrophic and she may face horrible things like rape and assault one she is moved. Her long term survival is statistically unlikely.        Factually, Some of these children we are fighting for will never really be adults due to mental disabilities and those with physical disabilities etc. could never pose a threat to National Security.      Having a family is a life long blessing.  Please allow these children the ability to be adopted up until age 18, just as we can adopt children who are American citizens up to age 18.          We hope that you will consider our plea for allowing the adoption age of children with special needs to be extended.  

Darla Messenger
99 supporters