Julianne Moore’s Oscar Speech Is a Win for Alzheimer’s Awareness

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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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Extraordinary Photo Series Shatters Preconceived Notions About Women Amputees

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

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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.

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How My Daughter’s Genetic Condition Made Me Stop and Notice the World

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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.

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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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They Said He Wouldn’t Live. He Did. They Said He Wouldn’t Talk. He Sings.

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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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How an Old Phone Book Helped My Friend’s Mom Grieve

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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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15 Wonderful Moments Parents Realized They Didn’t Have to Worry About Their Child Making Friends

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Whether it’s having someone to giggle with in class or a shoulder to cry on after a tough day, a best friend is a support system unlike any other. And when you’re a parent to a child with special needs, knowing your son or daughter has someone to hang out with can be a particularly huge relief.

We asked our readers on Facebook to describe a meaningful moment or experience their child has had with a best friend. Here are the moments you shared:

1. Our son is completely blind and is in mainstream kindergarten this year. Social connections are hard for him because he cannot see other kids to seek them out, nor can he keep up with them. The kids don’t really understand why he doesn’t approach them, and we were naturally a little worried about him making friends. There’s a little girl in his class who had a tough time adjusting and cried every day. We were told our son is the only one who can calm her down some days. She’s learned to guide him and tell him what’s going on. He still comforts her when she’s upset. They are absolute BFFs and have made huge impacts on each other’s lives.” — Katie Vescelus

2. “Our daughter, Journey, and her best friend, Bradley, spent the entire field trip to the National Museum of Natural History together. At the end of the day, as we got back on the bus, Bradley let Journey lay her head on his shoulder, and she watched him play on his iPad as we headed home. It was a very sweet, touching moment to know that she has such a good friend.” — Jamie Rankin

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3. “A typically developing teenager has befriended my 18-year-old daughter in a special way this year. They chat on Facecbook every afternoon and evening and send videos back and forth. Over the holidays, the young woman asked if she could come over to bring my daughter a present. They spent an hour in my daughter’s room laughing and talking (my daughter uses a communication device). It just melted our heart to hear them. Something so simple we didn’t even realize our daughter had been missing — a friend to giggle with.” — Kerith Zaccaria Stull

Kerith Zaccaria Stull

4. “For the second year, our son has what I call his ‘classroom wife,’ Holly. She’s half his size and has this tiny little voice. But when my brute of a boy is out of line and she tells him to stop, he listens. I need to bring her home. She’s awesome.” — Lorri Tucker

5. “Our son, Blaine, who has Distal 18q, is best friends with his cousin, Noah. Noah makes sure Blain is involved in whatever is going on, whether it’s a movie or running around outside. Blaine is nonverbal and can only make baby noises. When Noah’s name is mentioned, he lights up, and when he talks to him or plays with him, he gets so excited.” — Tabitha Monistere

Tabitha Monistere

6. “Just last Sunday I took my son to the pool, and after half an hour another mom arrived with her daughter. They both have similar disabilities — both in their 20s but function like preschool children. They took one look at each other and did not stop smiling ear to ear. They had the best time! — Gloria Payne Bearne

7. “The moment my daughter stopped having to be a passive observer and was able to keep up physically with her peers. When I received this picture of her dancing with her friend, my heart was dancing, too.” — Ali Schmeder-Cummins

Ali Schmeder-Cummins

8. “My 2-year-old with autism and sensory processing disorder is best friends with her 3-year-old sister. Their bond is like no other, and all the therapists have said it’s beautiful to watch how they connect and engage with each other. When my 2-year-old got close enough and kissed her big sister, my 3-year-old said, ‘Mommy, she kissed me!‘” — Melissa Cote

9. “My daughter was in a Special Olympics camp walking race. Because she didn’t understand what she was supposed to be doing, she stopped half way through and just stood there. Her best friend, also with special needs, stood up, walked to her, took her hand and led her across the finish line.” — Shelly Boeve

Shelly Boeve

10. My son, Finn, who has autism, was asked to be in a video the school district was making about kids with disabilities and how they are just like other kids. Each kid featured in the video was able to have a friend in the video with him. We asked a good friend of my son to help with the video, and when his mom was explaining the idea of the video to him, he said, ‘I didn’t know Finn had a disability!’ To him, Finn was just his friend.” — Leah Thomalla Gregory

11. “My son, who has autism, surprise ran into his best friend (also with autism) on a cold Saturday morning at the therapy clinic.” —Sandi Monaco Clark

Sandi Monaco Clark

12. “At the moment my 5-year-old daughter, Josefine, tells me I’m her best friend. Recently, I was out shopping and they were giving out purple balloons for a charity event. Purple is Josefine’s favorite color, so I took one home and tied it to a toy on the coffee table. When she came home from school and saw it, she said, ‘This is the best day ever!’ and gave me a hug.” — Kati Kainulainen

13. “When my son, who has Down syndrome, was in eighth grade, the band director suggested he join the marching band. It was wonderful, and he made lots of friends. One friend in particular was the head of the Color Guard — a beautiful, older and assured young woman. They were instant BFFs and have been since.” — Judy Pamer

Judy Pamer

14. “My daughter, who is nonverbal, spent the day with her buddy, Ciel. She was all smiles when she came home with the ability to hand objects to us and put on her own shirt without prompting! This is huge for her developmental delays!” — Bailey Annan Sonday

15. “A picture is worth a thousand words.” — April Lanord

April Lanord

*Some responses have been edited and shortened.

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