Cerebral Palsy Research - USA

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Steptember 2017
 
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Steptember 2017 has commenced in the US! Join our 28-day health and fitness challenge by signing you and up to three friends/colleagues/family members to walk or exercise 10,000 steps a day and help accelerate research for cerebral palsy. 

Register here: steptember.us

 

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Marelle Thornton appointed an Officer to the Order of Australia
 
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It was announced yesterday that former President and Chairman of Cerebral Palsy Alliance Marelle Thornton AM was appointed as an Officer to the Order of Australia (AO) for her outstanding achievements and service.

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Prof. Nadia Badawi and Jean-Louis at Time Inc.
 
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Just one day after presenting at the United Nations we had the esteemed honor of meeting with Time Inc. in their iconic Liberty Street building. 

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Prof. Nadia Badawi of Cerebral Palsy Alliance Research Foundation with Head of Development Bronya Metherall in the UNESCO conference room.
 
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Yesterday Cerebral Palsy Alliance Research Foundation attended a high-profile conference on gender equality at the UN. 

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We are very pleased to be attending the first annual ‘A Call To Action On Gender Equality’ conference at the United Nations Headquarters.

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Honorary Friends and Family Ambassador
 
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Marissa Lelogeais is not a person defined by cerebral palsy. If you ask her she will say her life is music, and music is her life. Her band The Merry Rockers all met while studying music together at Berklee College of Music in Boston, but for Marissa it goes much further back.

“Well, I was like 4 or 5 and I went to see Peter Pan on Broadway. I saw how much fun the actors looked like they were having onstage,” she says as she remembers her first musical inspiration.

Now 30 going on 31 Marissa, who prefers Mar, is the lead vocalist in The Merry Rockers, a fun, upbeat reggae band that regularly gig around Manhattan. Her favorite music? “Reggae would most definitely be number one. However I also LOVE Broadway shows so musical theater as well.”

This summer in between gigs Mar is looking forward to Broadway in Bryant Park, “I'm so excited to be back in the city for it. And my dad is taking me to see Coldplay so I am excited for that!”

Mar also takes part in an annual African Dance show in Minnesota, although it is a little difficult because of her cerebral palsy.

While it doesn’t define her, she does notice her differences. “For sure for sure. I'll be walking down the street and someone will look at me weirdly or someone will think I have a leg injury; I also walk with a red and white tipped cane due to my low vision. It frustrates me when I am trying to do something and my brain doesn't catch up to my body quickly enough.”

None of this seems to sap her spirit however. “Singing onstage and playing music with my friends gives me so much joy that I feel like I could burst. When I'm onstage, I feel empowered. While I may have CP, I can still play music and sing songs I wrote which I hope will make the people at the show smile... And dance!!”

For anyone with cerebral palsy she has the following advice- “To never give up on their dreams. You may think that your dream is unattainable. Believe me, I did. But when you're determined enough and have people that support you, anything is possible. You might not be able to do it to the same extent as someone who doesn't have any disabilities at all, but you can still do it.”

Mar also believes in the importance of cerebral palsy research, such as that being undertaken with help from the Cerebral Palsy Alliance Research Foundation, “because it can help shape the lives of the people who are here and the people who will come after us.”

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Family & Friends Honorary Ambassador
 
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Introducing our first Family & Friends Honorary Ambassador, Bill Richards Junior, from Sacramento California. At 42 years of age and living with a condition that makes it impossible to do unaided some of the basic daily activities that many of us take for granted, Bill doesn’t let it bring his spirits down. He also doesn’t let it stop him from traveling the world, with places like Hawaii, Mexico, Chicago and New York in his passport.

“The trip to Mexico I took for a cousin’s wedding was one that I will never forget. Puebla Mexico is not good for a wheelchair as it turns out,” he quips, when asked about his travels. “If the flights were shorter, and if the countries in Europe were better for wheelchairs, I guess somewhere in Europe might be on my bucket list.”

Bill writes to us with the help of computer software that writes speech-to-text through his laptop, gets around in a powered wheelchair, and has carers to assist in washing and bathroom visits. “There’s no reason to feel sorry for me, mate,” he laughs, “although it sure has been an interesting ride!”

Bill divides his time between speaking to 2nd and 3rd grade children at schools to raise awareness about disabilities, and a host of social activities. “I enjoy visiting friends and family, going swimming, out to meals, and to movies.” His favorite football team? “I love the San Francisco 49ers!”

While Bill doesn’t feel that there is anything wrong with his life, he passionately believes in research into preventing and curing cerebral palsy. “I would say to the science experts working on cerebral palsy research to just keep up the hard work, and don’t give up.”

“Cerebral palsy research is important to me, I would say, to keep improving the lives of anyone with cerebral palsy, and perhaps, one day in the future, to make it so maybe no one has to live with cerebral palsy, ever again, hopefully.”

When asked what he would invent if he could invent the next technology for people with cerebral palsy he struggled between some choices. “I would create some way I could drive myself in my van, or take myself to the restroom, or some way that I could walk by myself. Although I don’t really think about that last one very much at all.”

As our Family & Friends Honorary Ambassador he offers this advice to young children with cerebral palsy; “Humor, and a lot of patience are very important things to have.”