Topic

cerebral palsy

12 petitions

Update posted 6 days ago

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

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

Petition Updates and Part 1 of Description: UPDATE #1 (6/21/2017): Please scroll down past this description to read my first petition update in the "Updates" section entitled "My First Petition Update!" to read about the fraudulent study conducted by Dr. Jean-Paul Collet in regards to hyperbaric oxygen therapy and cerebral palsy (CP)!  We need to call Collet out on his injustice and demand that he revise the study's text to promote the truth that hyperbaric oxygen CAN treat CP! UPDATE #2 (6/21/2017): Please scroll down to view my second update about you (and other supporters) promoting this petition! :)  We need to get as many signatures as possible to get the FDA labeling regulations changed! *Photo on main page of petition from the Colorado Center for Hyperbaric Medicine [3]* Hi! My name is Christian Huber. I am 17 years old, and I have written a petition! Would you please take the time to read, and sign it if you support it? It would help me, and so many others with brain injuries! :) “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 17 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. References:[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.___________________________________________________________________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 ___________________________________________________________________ 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
65 supporters
Update posted 5 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
148 supporters
Started 7 months 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
94 supporters
Started 10 months ago

Petition to Bo Watson, Bill Haslam

Bring Katie Beckett waiver to Tennessee so our kids get the medical care they deserve

The Katie Beckett waiver has changed the lives of millions of special needs families by allowing those who are disabled to have access to Medicaid no matter the caregiver’s income. This allows families to stay together, and not have to place their children in an institution if their medical needs require nursing care or become too expensive. There is one catch: it’s optional for states to participate in the Katie Beckett waiver. Twenty-two states allow for the waiver. My home state of Tennessee is one of the 28 states that don’t. My petition hopes to change that. I am a special needs parent and struggle daily to pay my son’s medical expenses. My son has cerebral palsy resulting from a traumatic brain injury that happened at birth. He requires a feeding tube, a tracheostomy, and around the clock care to be sure he is safe. At any moment my son could face a life-threatening situation. Having the Katie Beckett waiver in Tennessee would mean being able to provide the nursing and monitoring support he needs. In order for children with complex medical needs to receive any extra support in Tennessee, they must meet certain financial criteria. Many families are like mine -- we work full-time jobs to keep our families afloat and pay the medical bills, barely scraping by, but our incomes disqualify us from receiving much-needed Medicaid benefits. Since private insurance doesn’t cover many of the expenses, like much needed private nursing to keep the child in the home, families like mine struggle. However, children with Medicaid receive benefits like at home nursing without any questions asked. It's time for a change. These kids rely on us to get them what they need, and we can't do it alone. We need the Katie Beckett waiver in Tennessee to get the help we need and deserve.

Misti Bray
3,826 supporters