Scientists Credit Ice Bucket Challenge With Exciting ALS Breakthrough

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We now finally have something that we can build a therapeutic strategy [with] for people with ALS,” Phillip Wong, a researcher at Johns Hopkins University, says in the video below, just before a bucket of ice water was dumped on his head.

We all remember how last summer the ALS Ice Bucket Challenge had people all over the world, including celebrities, dumping buckets of freezing water on themselves and donating money to fight the progressive neurodegenerative disease, amyotrophic lateral sclerosis, better know as ALS or Lou Gehrig’s disease.

The awareness and fundraising campaign was wildly successful, with the ALS Foundation raising more than $100 million in just 30 days last summer, whereas in the past they’d only raised a fraction of that ($2.8 million) in the same time period, according to an ALS Association press release.

Now, a new study, published by Johns Hopkins researchers last week, credits the Ice Bucket Challenge with helping them make a big breakthrough in the quest for treatment and a cure, BBC News reported. Specifically, there’s now a better understanding a protein called TDP-43, which is dysfunctional in 97 percent of cases of ALS, according to a post the researchers put on Reddit.

Wong and fellow researcher Jonathan Ling explain in the video below how the scientific community has spent a decade trying to better understand this particular protein. Now, they may have finally figured it out thanks to the extra funding that came from the Ice Bucket Challenge. The viral campaign came at a critical time and helped facilitate this discovery, they say.

Understanding TDP-43 better could mean great things for future ALS patients.

The best part is it (the malfunction of the protein) can be fixed,” Ling says in the video below. “So with any luck, this could lead to the possibility of a cure or at least a slowing down of this terrible disease.”

Watch the excited researchers explain their discovery below, right before participating in the Ice Bucket Challenge: 

Check out the full report in the Science Journal here or read this AMA on Reddit for more information.

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Why a Judgmental Comment About Our Son With Autism Still Hurts

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This weekend was hard.

On Friday, our son, Max, went on a wonderful field trip to the Museum of Natural Curiosity in Lehi, Utah. It was really fun for our family and he had a blast.

The museum is loud and has a lot of lights, sounds and colors. Even though he had a great time, I knew the rest of the day was going to be hard. His brain was on overdrive. He was overstimulated and overwhelmed. One thing after another made him panic, cry, have a tantrum and get upset. He destroyed his bedroom, smeared poop on the walls (I will spare you the picture) and crashed by 7 p.m.

Being overstimulated is something that Max deals with on a regular basis. He has some coping methods, but he’s almost 4, not 12. When he’s really overwhelmed, he flaps his arms, hits his head, screams, cries and acts out. My husband, Will, and I try our best to prepare him for a situation, but there’s no way we can predict how he will react. (This is a great video that shows what sensory overload can be like.)

Church is hard for him. He does well in small groups, but the large sacrament meeting — with sounds coming from everywhere, bright lights and a lot of people — puts his senses into overdrive. Just imagine closing your eyes in a large room. There are sounds everywhere, feet moving on the floor, people talking and the building’s cracking and making noises. Max hears and sees everything, and it’s all very hard on his brain. If he gets too overwhelmed, he either act out, cry, run away, physically hurt himself or others or try his best to use coping skills to deal with the situation. This is what autism looks like for our son. This is what Max deals with daily.

So if you see us at church or any social event, Max might be playing with toy trains, he might be jumping up and down, he might spin in circles in the doorway or hallway of a building, he might be playing on the iPhone or iPad, which allows him to use his voice to tell us what’s wrong.

He might repeat the same thing over and over and get louder and louder, and, of course, we will explain to him what’s appropriate for the situation, but we can’t predict his outbursts. He might hit his head with his hands or run from us, even after calling his name over and over. This is all normal. These things aren’t an indication of our lack of parenting; this is us trying to help our child cope with the world. Because his world can be lonely, scary and really hard.

After someone made a judgmental comment toward us, I posted this on my Facebook page: “Be kind to one another. Judging hurts at any age and in any situation.”

I felt like I needed to defend myself and my child. It wasn’t his fault that an adult didn’t understand him. I had to be his voice. So I posted that in his defense and to recognize that all people deserve to feel loved. All people deserve kindness.

On the outside, Max looks like a typical (almost) 4-year-old. He’s taller than his peers. He wears boys clothes, not toddler clothes anymore. He’s expected to communicate like a 4- or 5-year-old, but he is about two years behind his peers.

People stare at him, and that’s OK. He doesn’t notice for now, but he will. Will and I notice. We notice the whispers and the faces of those who judge the way my child is acting. Will and I have heard it all. We have watched adults and children laugh at Max. It hurts. Max one day will notice, and we’ll be there to love and support him, to tell him how special he is, how smart he is and how lucky he is to have so many people who do support him. I know we have so many people who support us, who care for us and pray for our family, but that doesn’t take the hurt of that one judgmental comment away. Will and I are human, trying to be superheroes to both of our special boys.

Our parenting style has to be different, it has to look different and that’s OK. Just because we’re doing things our way doesn’t make it wrong. Max has taught me to be more compassionate, to care more and to be more understanding of all people. I adore him and his unique traits. I have learned more about trains, firetrucks, “Pocoyo” and construction sites than I ever thought possible. I have also learned how valuable friendships are and how important it is to have a village to help raise a child.

Tiffany Strong the mighty.2-001

Follow this journey on Spaceship Max.

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What We Can Learn From the Life and Death of My Sister With Schizophrenia

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My sister Regina was an outgoing, popular and beautiful spirit. In contrast, I was shy and awkward and — OK, I’ll say it — a bit nerdy. I always envied her social graces. But at the age of 16, she began to become “spacey.” We thought she might be experimenting with drugs, but the symptoms persisted and worsened over time. She began to neglect her appearance. She began to seem in a fog and disorganized. At this time I was away at college as a pre-med major. My father became increasingly alarmed and ultimately took her to see a doctor when she was wandering the halls of her high school in a complete daze, unsure of where she should be. She was hospitalized at a children’s psychiatric hospital, and when I returned home from college for a visit I could scarcely believe the transformation.

She barely recognized me. She was sedated on medication with horrible side effects. The light in her eyes had gone out. She stayed in the hospital for a year, and I changed my major from pre-med to psychology. The doctors were throwing out the label “schizophrenia” at the time, and I had only the most basic understanding of that illness. Helpless, I watched as Regina’s life became a series of hospitalizations. I was devastated.

After graduating from college I worked in an adolescent psychiatric ward, trying to desperately help others while working through the grief that I couldn’t help her. I ultimately did follow my dream to go to medical school. When I was in residency (working more than 80 hours a week), I received a phone call that Regina was in an emergency room in New York and might not survive. I called the ER and spoke with her nurse, who told me they were treating her for cardiac Lyme disease. I was dumbfounded. Regina wasn’t the type to tramp through the woods collecting ticks, how could she have contracted Lyme disease? It never even occurred to me that the ER staff were not appraised of her medications. The actual problem was that her lithium (one of the medication she was taking at the time) was at toxic levels. Without the insight to explain to them she was taking medication, my sister was being treated for the wrong thing.

I flew up to New York and burst out in tears when I saw her. I resolved I would bring her to North Carolina to come live with me so this could never happen again. A few months later she moved in with me. Of course, I bit off more than I could chew in my zealousness. She became floridly psychotic and paranoid, unsafe to leave alone (and I was working 80 hour work weeks doing a residency in internal medicine). With the help of the social workers, I found out about resources in the community, and was referred to the Sanctuary House, a nonprofit that offers services for adults living with mental illness.

The Sanctuary House was a lifesaver. She shined there, made friends and became socially engaged in events. She learned job skills and went to work, earning a small salary. The staff became her family and looked out for her best interest. They communicated with me and kept me abreast of Regina’s progress and issues. I will always be incredibly grateful for the excellent care they gave to her.

But the Sanctuary House had only day-programs, and Regina ultimately went to live in a group home. An unfortunate series of events followed. One group home closed without warning. At another, the staff took advantage of her. One took out a credit card in her name and ran it up into the thousands of dollars. The woman who ran this group home pulled Regina out of Sanctuary House and enrolled her in another program that provided very little. At the time, Regina told me she “liked” the new program — although in retrospect, she probably “liked” the fact that she wasn’t challenged. Regina’s condition steadily deteriorated after that. She was hospitalized a few weeks before she died, but even after she got out of the hospital, she didn’t seem quite right. She was edgy and irritable.

I woke up one morning in March 31, 2011 to multiple phone messages, including one from my father. As I listened to the panic in his voice — “Chris, call me back, it’s Regina…..I think she’s gone”— I hoped he meant she’d run away from the group home. But I could tell in his voice that “she’s gone” meant something much more dire. As I was about to call him back, a call came in from the group home. Regina was dead. She was found sprawled across her bed unresponsive. I raced to the group home. She was face down with her purse hooked on her arm. She had urinated on herself. I insisted on an autopsy and had to practically fight the coroner to agree. A 41-year-old dying suddenly and unexpectedly would warrant an inquiry as to why, especially when she had been the victim of fraud by a group home member who had been prosecuted for the crime. But this isn’t the case for the mentally ill. In the end, the coroner chalked it up to a seizure. Seizure as a consequence of medication to treat schizoaffective bipolar disorder.

She was my sister. I will be forever heartbroken by her story and how it ended.

But if telling her story can prevent one person from having to endure the pain my family went through, I’ll tell it. If telling makes the community aware of the woefully inadequate mental health services in our country, but also shines light on the selfless organizations like the Sanctuary House who fight for these who are neglected, then I will tell her story to anyone willing to listen.

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Why I Think It’s OK to Get Pregnant After Having a Child With Special Needs

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Those double lines came at one of the hardest times in our marriage. We were sinking financially. We were still trying to find out if our daughter, Adelaide, was terminally ill. If her condition was deteriorating. If we were carriers of some disease.

I couldn’t fit into any of my clothes for a Saturday wedding. So I jokingly took a Friday night pregnancy test. And it was positive. We were shocked. And when I should’ve been thrilled, I immediately started thinking of all the things people would say.

We had already heard from loved ones and strangers alike who said we had the perfect little family. One boy. One girl. A girl who needed so much. In seemingly nice ways, and horribly insensitive ways, we heard the opinions about our family being complete. No more room for anymore Ballews.

As I stood in that kitchen smiling and laughing and crying with my husband, I already felt my joy being stifled. I was fearful of the looks and comments that I knew were coming.

I’ve never understood the “one of each” mentality, but I’m not judging people who stop having children after a son and a daughter. I don’t think it’s wrong to decide to stop conceiving or adopting. I don’t think it’s wrong to have an only child. Or to have no children at all.

When Adelaide turned 1, we were still waiting for our second opinion on her MRI. We were still a couple months away from meeting with a pediatric neurologist, the one we hoped would have some answers.

While we waited on the doctor’s opinion about our baby’s brain, opinions about my uterus were still pouring in: “You’re done having kids after that one, right?” and “You already have one healthy kid. Don’t test your luck.”

The opinions crossed over from the cultural obsession with one boy/one girl to this unhealthy obsession with never giving kids with disabilities younger siblings.

So many people think they have the answers for me and other moms in the special needs community. And it’s almost worse when you’re in the undiagnosed club. Too many variables. They forget that any child at anytime has the potential for glitches in the DNA. And that perfect babies don’t exist.

And this lie that a woman can’t have another child after one is born with issues causes us to put some of our joy on the back burner.

I think it’s wrong to tell a woman who is raising a child with special needs that she no longer has the option of more children and that a child with disabilities can’t be a big sister. But I wasn’t brave enough to say these things when I was pregnant with my third.

I made the mistake of letting everyone into my head. When I should’ve been rejoicing, I was worrying. I stressed about how people would judge me. How he was thinking we should’ve been more careful. How she was thinking we should’ve waited for more genetic tests. How they were thinking we couldn’t afford another little one with all of Adelaide’s medical bills. How everyone was thinking I couldn’t handle three kids so close together.

When we announced our pregnancy, my imagined fears became reality. I rarely heard a “Congratulations!” without a comment like “Are you worried it will have disabilities, too?” or “Well, you know this one’s your last, right?” or “What are the chances it won’t be healthy?”

I always had witty responses, but I never the courage to say them.

I also lacked the courage to tell our new neurologist that I was already pregnant with a baby we hadn’t planned on. At all. “You may decide to have more children someday after doing all the genetic tests,” he told me. I just kept my mouth shut. He didn’t see my baby bump because I was hiding it. I wasn’t emotionally ready to be judged by one more person.

As I sobbed on the way home about Adelaide’s appointment, our news about polymicrogyria and the realization that there was no cure ever for our sweet daughter, I just held my small baby bump. Dave looked over and said, “Every single baby comes from a messy gene pool. It’s a crapshoot. But we’re in this together.” He thought I was fearful for Baby Ballew’s future but I wasn’t.

No, I was fearful for mine. I was doubting my ability to parent this surprise. I was so sick from growing a human and breastfeeding another. And it seemed like more proof that the lies I kept hearing were true. I was in over my head. I could barely mother two, but now I would have more kids than hands. I gave into all the comments from man when I believe I should’ve been listening to the Holy Spirit.

Bess was unexpected. She wasn’t planned by us at all. But she was dearly loved by us from that first pregnancy test. And I believe she was loved by God before we even knew about her. How I wish I could go back and silence my inner chatter and all the naysayers.

Now I often hear, “Three? You’re done, right?” or “You’ve got your hands so full you would never even think of a fourth, right?” or “Guess you’re done! Where would you put another one and push a wheelchair?” I just smile and walk away if the person seems sweet and nosy, and I give my “teacher look” if the person is rude and needs to quickly walk away for everyone’s safety.

I don’t know if we’ll have a fourth. We aren’t planning anything. We gave away our baby items to make room for homeschool containers. When my son, Graham, asks when he’s getting another sibling, I just say that we don’t know if we’ll have anymore babies.

But if we do, I won’t make the mistake I made with Bess. I won’t listen to all the people who share their opinions, well-meaning or nasty. I would proudly show off my baby bump, shout from the rooftops that another blessing is on the way and ignore the comments about making Adelaide a big sister to another sibling who will eventually pass her up.

It’s hard slaying the idols of pleasing others and being accepted. But I won’t stop trying. I owe it to my kids to celebrate them to the fullest.

Lyndse Ballew the mighty.1-001

Follow this journey on Little House in the City.

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My 4 Words for the People Who Doubted Me Because of My Autism

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I wrote this letter in 2011 the day after receiving my college degree. So many people told me it would never be done in my life, and I wanted to share it with the people at The Mighty to inspire hope that our kids are capable of amazing things. This one’s for you…

Yesterday was my graduation from Seton Hall University. Because this has been one of the most emotional and happiest days of my life, I’ve taken some time to reflect on my journey and get my thoughts down on paper. Many people told me my road toward a good education was going to be rough. The word “impossible” was a word I learned very early on in regards to people’s opinions about whether or not I could get to college, let alone graduate from college. Now I just have to say…

To the physician who told me when I was 6 that I would be lucky to get to high school, this one’s for you.

To the special education teachers who looked down at me like I was broken, this one’s for you.

For the years of being taunted and bullied by kids, saying I can’t and wouldn’t achieve greatness, this one’s for you.

To the people who helped me through physical therapy, occupational therapy and speech therapy until I was 14, this one’s for you.

To my parents, friends and relatives who see me as an individual first who is/was never broken, this one’s for you.

To those teachers who said I could do it, this one’s for you.

To the countless other individuals out there who are autistic or love someone who is autistic, this one’s for you.

To the people who say you can’t do something even though you can, this one’s for you.

At the end of the day, the influences in our lives send us on our path, either good or bad. When I was 4, I was diagnosed on the spectrum. Now 18 years later I’m a college graduate who will be going to graduate school for a Master of Arts in Strategic Communication and Leadership. For all those people, again, the good and the bad, thank you. You’ve made me who I am today, and I wouldn’t have it any other way.

This one’s for you.

A version of this post originally appeared on Kerrymagro.com.

Kerry contributed a chapter to a new book titled “College for Students with Disabilities: We Do Belong” where Kerry talks more about his pursuit of becoming a national speaker and getting through college with a learning disability. The book was authored by Stephen Shore and Pavan John Anthony with the forward written by Dr. Temple Grandin. You can learn more about the book here.

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Joy Spreads Across This Girl’s Face as She Uses Her Prosthetic for the First Time

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The look on 8-year-old Isabella’s face when she uses her 3D-printed prosthetic arm for the first time is like Christmas and her birthday all rolled into one.

Isabella’s cool new purple, pink and green arm was built and delivered by a man named Stephen Davies who volunteers for E-NABLE’s Team Unlimbited, according to the YouTube video below. E-NABLE is a global network of volunteers who use 3D printing to create prosthetic arms and hands for kids.

It wasn’t until Isabella successfully picked up her first object with it, at the 1:40 minute mark, that the joy really spread across her face.

Watch the video below to see Isabella get her new arm:

h/t Reddit Uplifting 

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