Eddie Redmayne took home the Actor in a Leading Role Academy Award last night for his performance as Stephen Hawking in “The Theory of Everything.” The film, which follows the life of renowned scientist Stephen Hawking as he grapples with an ALS diagnosis, was also nominated for Best Picture.

This Oscar belongs to all of those people around the world battling ALS,” Redmayne says in his touching acceptance speech below.

Congratulations, Redmayne, and here’s to more awareness surrounding a crippling and devastating disease.

Update: Following the big win, Hawking wrote Redmayne the following congratulations on Facebook.

Watch the trailer to The Theory of Everything here. Check out this post to read more about Oscar-nominated films portraying disability and disease

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Last night, Julianne Moore took home the Best Actress in a Leading Role Academy Award for her performance in “Still Alice.” In the film, Moore’s character, a renowned professor, faces a devastating diagnosis of younger-onset Alzheimer’s disease.

I’m so happy, I’m thrilled, actually, that we were able to hopefully shine a light on Alzheimer’s disease,” Moore says in her acceptance speech below. “So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is that they make us feel seen and not alone. People with Alzheimer’s deserve to be seen, so that we can find a cure.”

Moore’s speech, as well as the film, will help draw attention to the debilitating disease, which currently over 5 million Americans are living with, according to the Alzheimer’s Association.

 

Watch the trailer here, or go here to read more about oscar-nominated films depicting disability and disease.

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“Amputee Venus” is a collection of photographs featuring 11 Japanese women proudly wearing artistically decorated prosthetic legs.

Masami
Copyright Takoa Ochi, from the photo book “Amputee Venus”

The concept for the project originated when Takoa Ochi, experienced in photographing athletes with disabilities, teamed up with Fumio Usui, a prosthetics expert in Japan. Usui began referring clients, who were ready to share their stories, to Ochi, and with that, “Amputee Venus” was born. The finished product was released last year and features photographs of women posing and playing sports.

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Copyright Takoa Ochi, from the photo book “Amputee Venus”

The images ooze confidence and poise, but some of the women in these photographs did not always feel so self-assured about their artificial limbs. Yoko Sato, one of the participants, told Reuters she felt hopeless and sad after losing her leg in a car accident and the stigma surrounding amputation and disability didn’t help matters.

“My main aim is to change the perception that disabled people are pitiful,” Sato told Reuters at a photo shoot this past Valentine’s Day. She added that it would be great if people could view prosthetics as fashion accessories, too.

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Copyright Takoa Ochi, from the photo book “Amputee Venus”

Ochi hopes his photographs will help the negative connotations surrounding the word “disabled” disappear. “Photographs, too, have the power to break down barriers and open doors,” he said, according to the project’s website.

From FB
From the “Amputee Venus” Facebook page

To see more beautiful photographs and learn more about “Amputee Venus,” visit the project’s website and Facebook page.


Hey, big girl.

I wanted to tell you that the other day I saw some college students pushing one of their friends in a wheel chair. I watched as they wheeled him past me, and I tried not to stare, but it made me proud.

And then this week I saw a woman in Target who had a disability. She was making her way through her grocery list and had a friend there to help. It was hard for her, but she was doing it. One item at a time, she was getting what she needed.

Seeing them made me think about their journey — the things they’ve had to try hard at and the things they’ve overcome. I thought about their mamas and how they must have held them close like I hold you.

Emmy, you know how Mama told you that having you makes me stop and notice the world? There are things that, in my hurrying, I never noticed before. But now… now I treasure new things. New people. See, Em? You’re already changing me.

emmys-bday

I know that people notice you. They notice how you draw them in with your sparkly eyes. They notice how you say “Hi” (already!) and how you reach out your tiny hand for theirs. They notice how you make them forget there are hard things we will have to conquer.

But you’re doing it, Em! You’re moving and getting stronger, you’re babbling and even saying some words. You’re standing with our help, trying new food, being silly on purpose and pushing your brother away when you’re mad. You’re trying new things and cheering yourself on. There is a strength you’re discovering and my cup overflows. How could I be so blessed?

Keep going, Emmy. You’re doing so well.

This post originally appeared on Dear Emmy.

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My son, Matthew, was born premature at only 24 weeks; he weighed just over a pound, and his hopes for survival were grim. He and his twin brother, Brandon, were placed in incubators, where they began their fight. Brandon sadly passed away due to complications from a surgery at only 3 months old.

Matthew remained in an incubator and fought hard. He overcame many of the odds stacked against him, including heart surgery shortly after birth. After many months on life support in the NICU incubator, he was finally ready to come home.

The night before his release he contracted RSV. He became ill, eventually going into a comatose state. He became non-responsive, and we were called in to make a life decision. They told us there was no hope for recovery and stated that even if he were to survive, he would live in a vegetative state. The hospital tried to convince us to terminate all efforts. We refused to do so. We requested he be sent to The University of Michigan Health System. A survival flight helicopter flew in and Matthew was transported with a lung machine.

He remained on a lung oscillation machine in a comatose state for over 30 days. After about five stressful weeks, our prayers were answered when he woke up. Finally, in May, we received the news that our little boy was ready to come home. Not only is he not living in a vegetative state, he’s in a regular school in fifth grade and gets straight A’s.

At an early age, his speech therapist told us Matthew would never speak, and we should look into a computerized communication devise. Well, not only does he speak (and never stops) — but he can also sing.  Just look at his Youtube video:

You can see more about Matthew on his Facebook page, Matthew Peake Romanow. If you’d like, you can donate to our family for Matthew’s medical expenses on his GoFundMe page. Even if you are unable to make a donation, we’d love for you to share his page to spread the word.

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Today, I had lunch with a friend, Dave, whose brother Mark was tragically killed in an automobile accident in 1983. We were speaking on loss, which is how the subject of Mark’s untimely passing came up. Dave spoke from the heart on the void that Mark’s passing left in his heart and in his family. He then told me the following story.

When Mark was a young man in Poughkeepsie, New York, he played in a softball league on a team named the Diamond Dogs — a silly name Dave said was a constant source of amusement to his family. The phone would ring and, if the call was for Mark, Dave’s mom would summon him to the phone by asking the “Diamond Dog” come get the call. This type of banter was constant — a source of amusement for a mother and a source of irritation for a son.

After Mark’s passing, the family’s grief was great. A few years later, Dave and Mark’s dad took their mom to Hawaii. Throughout her life, Dave’s mom was a religious woman who took great comfort in reading the Bible. Upon checking in at the hotel, she wanted to read from the Book while her husband took a walk. She searched the hotel room for the obligatory copy, but all she found, according to Dave, was a telephone book. She took the telephone book out of the drawer and on the back cover she found the following handwritten message: “The Diamond Dog sends his greetings.”

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Dave told me that his father, upon hearing this story from his wife and seeing the message himself, felt this was just a coincidence. His mom, however, felt that this was God’s tender mercy and that Mark was telling her he’s OK. The cover of the phone book this message was on became Dave’s mom’s prized possession. When she passed, it was placed with her in her casket as she requested.

To lose someone you love alters your life forever. You don’t get over it because ‘it” is the person you loved. The pain stops, there are new people, but the gap never closes. But on that day, in a hotel room in Hawaii, this gap bridged for a mother who lost a son.

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