MIT’s Open Style Lab – Mentorship

An amazing program that I am honored to be contributing to is MIT’s Open Style Lab, the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.  A strategic platform that focuses on new wearable technology for those with limited mobility.

Helping bring visionary designs that aid people with limited mobility and dexterity to production is the ultimate goal.  What I absolutely endear about this program is that it brings together 3 areas of focus for 1 greater goal.  To unify the occupational, engineering and textile world under one umbrella in efforts to create a level platform has long been overdue.  I am proud to be a part of the process.

Below is an article published for Boston Magazine.  I believe it sums up the program nicely.  For more information, amazing stories and updates, check out Open Style Lab.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

http://www.bostonmagazine.com/health/blog/2014/08/04/mit-open-style-lab/

 

Students Create Adaptive Clothing at MIT Open Style Lab

Engineering, design, and occupational therapy majors team up to design apparel for people with disabilities.

Barbara and her Open Design Lab team. Photo provided.

After a series of fractures left her in unbearable pain, Barbara Harrison elected to have below-the-knee amputation. While she knew the surgery would change her life, she wasn’t prepared for the small changes that nobody thinks about—like how clothes will fit.

Harrison, a Winthrop resident, now has a prosthetic leg, and the process of getting dressed in the morning is more difficult. That’s why a team of college students at Massachusetts Institute of Technology (MIT) are working together to design a new kind of pant that can be functional for those with disabilities.

Creating apparel that is both functional and aesthetically-pleasing is the whole idea behind the MIT Open Style Lab (OSL), a new 10-week summer program where students design clothing solutions for people with physical disabilities. Funded by university grants and corporate sponsors, the program is the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.

“Clothing is social capital. Often [clothing for people with disabilities] falls under the functional end of the spectrum and doesn’t look cool or stylish,” Teo says. “What we’ve noticed is even if you have the best intentions, the best product, the most helpful technology, if it doesn’t look great, people don’t want to wear it.”

OSL fellow Alex Peacock's sketch of a glove that can be worn by his client who has fisted hands due to a spinal cord injury. Photo by Kira Bender.

Hoping to change this trend, Teo and Tin have recruited 24 engineering, design, and occupational therapy students to this summer’s inaugural OSL program. The students work in teams of three, with each team assigned to one of the program’s eight clients—all of whom, like Harrison, have a physical disability. In the early weeks of the program, which began in June, teams met with their clients to identify specific clothing challenges. Now, students are focused on creating prototypes of their designs under the guidance of expert mentors.

Maura Horton, a professional designer, is one of them. Though her background is in designing clothing for children, Horton’s recent efforts have focused elsewhere. She is the creative force behind MagnaReady, a line of dress shirts for seniors and people with limited mobility that uses magnets instead of traditional buttons. She designed the shirts after her husband, then a 48-year-old college football coach, was diagnosed with Parkinson’s Disease—a debilitating condition which left him unable to dress himself.

“When my husband was first diagnosed , I looked at the [adaptive clothing] choices that were available online. It frightened me,” Horton says. “What I was seeing online was not something I wanted to replicate with my family. They were not quality choices.”

Horton says one of the most important aspects of her “magnet-infused” shirt design, which her OSL students use for inspiration, is that it looks like any other dress shirt available in stores. Unlike other adaptive clothing, it does not differ in appearance from traditional clothing in an obvious way.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

As founders of the OSL program, Teo and Tin share Horton’s sensibility. The ultimate goal of the program, they say, is to make “the distribution of clothing more accessible.”

“Everyone has a range of clothing to work with because [clothing is] a channel for self expression. For populations with disabilities, that vocabulary is limited,” Tin says. “What we’re doing with Open Style Lab is to reintroduce diversity into their wardrobe.”

Student teams will reveal their final clothing prototypes at a public presentation at MIT on August 16 from 3:30 p.m to 5 p.m. The prototypes will also be presented during weekends in October at Boston’s Museum of Science. For more information, visit openstylelab.com

Grace Teo and Alice Tin try on goggles that mimic eye diseases at the MIT AgeLab. Photo by Laura Hanson.

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Live Your Life Without Boundaries!

I am humbled to share Justin’s story and his company UNlimiters.  He has created a wonderful resource center to help so many.  Please take a moment to watch his video but more importantly to hear his words

Watch here

 

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Felling like an outsider is not acceptable in today’s world! WE should all feel like we can do what everyone else can.

 

 

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Born with Cerebral Palsy, UNlimiters founder Justin Farley has always had a passion and determination to live an unlimited life in big ways, and in small ones.
For example, because his Cerebral Palsy causes shakiness and unsteadiness in his right side, Justin always struggled with buttons and fine motor skills. But with the help of the MagnaReady shirt, Justin can dress like the business professional he is.

http://www.unlimiters.com/default.asp

I am happy to be a small part of his journey. 

MagnaReady and Michael J. Fox Foundation Commitment

many ask me personally “What my home run is for our company” My answer is simple.  There isn’t one until there is a cure.  Therefore, for the month of April – Parkinson’s Awareness Month, we are donating a percentage of each purchase to the michael j. foundation to help fund a cure.  I truly belive we are all in this together!

 

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Below is the Blog that was posted on behalf of MagnaReady® and MJF and  teamFox

MagnaReady Supports Team Fox for Parkinson’s Awareness Month

Posted by  Maura Horton, April 02, 2014

MagnaReady Supports Team Fox for Parkinson's Awareness Month

Editor’s Note: With her portion of proceeds campaign launching this April, we asked Team Fox member and MagnaReady creator Maura Horton to tell us the story behind her innovative magnetic button down shirts.

“Mom, will you button my shirt?”

As a mother of two young children, this is a question that I have heard repeatedly over the last 10 years. When one child mastered the skill, the second began to verbalize the same basic need. Somewhere in the mix, I started hearing the same pleas from my husband Don. As the limited mobility effects of Parkinson’s began to set in, he was beginning to struggle with this simple task as well.

First, I started noticing that I was ready before Don; something that had never happened in our many years of marriage. I was the one now standing at the bottom of the stairs inquiring, “How much longer?”, pressing him, “We are going to be late!” During our morning routine, I would witness instinctive, honest-loving moments from our two girls, jumping up on our bed, using it as a ladder, to help their 6-foot-4 athletic father get ready for work by helping him to button his dress shirt.  I was naive, and thought that this challenge only happened for him when he was in the privacy of our home, not really giving thought to how Don got dressed when we weren’t around. He has Parkinson’s, but we rarely ever talked about the limitations. To admit to the struggle would mean acceptance.

As a college football coach, Don traveled quite a bit with a busy schedule in and out of locker rooms and hotels. The season brings early mornings and late nights, and honestly not a lot of time for small talk in between. However, on one particular night, after coming in from away game, he was anxious to tell me, “I had a hard day.” He repeated and elaborated, “I had a hard day. A player had to help me get dressed to catch the team plane.” Once he spoke of all the particulars I desperately wanted to help him. This was, after all, a man who never complained.

The Hortons with Seattle Seahawks quarterback Russell Wilson
The Horton family with Russell Wilson, Seattle Seahawks quarterback.

I realized in his words that despite the wins and losses on the field, here in this moment, my husband felt defeated. His dignity had been lost, and the simple fact that his body was betraying him was almost unbearable. For over twenty years, I had been on the sidelines watching Don be a leader, inspiring his players to be better players; to be better men. Mentally, I knew he could overcome the changes he was going through and could motivate himself to stay strong and move forward, but physically, I realized, that his battle with Parkinson’s was not going to be a fair fight, and I could see that my husband’s spirit was starting to deflate.

Getting dressed shouldn’t be stressful; living with a disability is hard enough. As I thought through how I could help, the epiphany came, and soon MagnaReady – Stress Free Shirting was born. If there is anything that I have learned from being a coach’s wife, perseverance prevails and something constructive comes from every defeat.

How you can join us this April for Parkinson’s Awareness month:

In our office hangs a sign that says – “Remember Why You Started”. Our mission is simple and MagnaReady is dedicated to giving back to the Parkinson’s community that we are proud to be a part of. So throughout the month of April, MagnaReady is committed to donating 10 percent of every purchase to the MJF Foundation during Parkinson’s Awareness Month.

TAGS: Caring for Someone with Parkinson’s Disease, Team Fox, Getting Involved

Until there is a cure we will be the change.

Just Being Is Fun

Sometimes we dwell on the changes we have undergone and are scared of what lies ahead but because of these two little ones we opt for a different path.

I never lose sight of the fact that just being is fun. ~ Katharine Hepburn

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Quote is by Katharine Hepburn – Many know her from her amazing breath of work on-screen.  Others know her for having Essential Tremor as well.

Essential Tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. Some even feel an internal shake. It is often confused with Parkinson’s disease although ET is eight times more common and affects an estimated 10 million Americans alone.

A few great resources for ET are  International Essential Tremor Foundation and Tremor Action Network

Another quote by Katharine Hepburn

“Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!”.

The Gift That Keeps Giving!

One of the greatest gifts that I am receiving this holiday is pictures and stories of your loved ones in their MagnaReady shirts.  Some of you I have had the pleasure of speaking with directly and I so enjoy putting a face with the name!

Please keep sending.

One face, one shirt at a time – we WILL change the way limited mobility or disability look. We are all in this together!

The pictures of your loved ones in their new shirts are making our year!!

Maura,
Here is a picture of my Dad–Richard Richardson– in his MagnaReady shirt.  It was a big hit and the quote of the day was:

                           “WOW–NO BUTTONS!”


Wish i had video taped it, it was SO well received!

Thanks again Maura!

Lucky

Lucky’s Real Tomatoes

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Make A Difference

I post the following personal letter not to highlight Don’s impact through his career but to help illuminate that anyone can make a difference.  Be kind – expect great things because the people you touch will in turn DO great things!

Serving his 7th deployment in Afghanistan

Serving His 7th Deployment In Afghanistan

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A Late Bloomer “Pee Wee” Turned American Hero

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Lessons Taught Through Sports Can Equal Positive Life Lessons

Thank you Colonel for your kind words they mean the world to our family but more importantly for your amazing service and dedication to our country!

 

My pleasure to introduce Francis Hulshof, a honored Veteran of the Year!

Francis Hulshof, Veteran of the Year Award, given by the First State Community Bank of Portageville, MO

Francis Hulshof, Veteran of the Year Award, given by the First State Community Bank of Portageville, MO

It has become my goal to change the face of limited mobility.  The only way I know how is to spotlight stories and pictures of others to help change the view.  Here is just one…..

The people we meet along the way are far more heroic and fascinating than ourselves.  I received an everyday order for two MagnaReady shirts.  The sizing varied, one medium and one large.  As old fashioned as it sounds, I picked up the phone to call the customer (Francis’s daughter Karen Masterson) to see if I could help and look who I met!

Below is a few segments from a tribute his son gave when receiving his distinguished honor.

Francis Hulshof  grew up and worked on a farm in Portageville Missouri.

 He was drafted into he army like a lot of other young men on Feb 14th, 1951

Local farmer of small stature and a big heart being recognized as the Veteran of the Year. Francis Hulshof was that man.

Local farmer of small stature and a big heart being recognized as the Veteran of the Year. Francis Hulshof was that man.

He was given the job for driving the jeep for Col. Ralph Melcher. Together they worked as Forward Observers, going to the front line to assess the situation, and return back to their camp with new information to process and use in offensive maneuvers.

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Francis Hulshof stands in front of his military memorabilia and plaques that
have been presented to him throughout the years. The two in his hands are
this years Veterans Recognition plaque, right hand, and a Thank You Certifi cate from the Republic of Korea. He received this earlier in the year during the 60th Anniversary of the signing of the Korean War Armistice

Some stories heard from veterans are very entertaining but then again serious. It was their way to remember certain stories and react to the magnitude of the situation. I remember one buddy said to the other, “Where were you when we were attacked at Pearl Harbor?” “I was up on the roof with my machine gun, shooting down every zero I could see.” While the other replied, “Oh no you weren’t, you were hiding down under the bunker with your head down, I saw ya.

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Francis Hulshof and Charlie Haubold chat with
each other at the Veterans Appreciation Breakfast

He was with the 8th field artillery of the 25th Infantry Division, commonly known as Tropic Lightning and he was stationed around Hill 1062 most of his deployment. Corporal Hulshof never said much about the battles.

 Today we thank you!

What an honor and privilege that Francis will be wearing  our  MagnaReady shirt!

Human Factor with Sanjay Gupta – Don’s Words

We are honored to be a part of Sanjay Gupta‘s Human Factor series today. I have blogged many times.  They asked to hear the story through Don’s perspective.  Below are his words.

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Don Horton – Father, Coach, Son, Brother, Friend and Parkinson’s Fighter

When I was 48, I was working at Boston College, O-line University, in the pinnacle of my career and raising the family we had waited for so long to start, the last thing I was ready for was being told I had Parkinson’s.  There we were, being warned, that our lives were changing forever.  Maura didn’t blink an eye.  We were both fairly sure that the progression would preclude us.  When we spoke of the disease, we were always positive and stayed strong.  In hindsight, I realize how scared both of us silently were.

My daily activities didn’t change.  I worked, as all coaches do, extremely long days, but looming in the back of my mind was the disease and its’ progression.  To thwart the development I was to stay active, something I had always been; however, I started to notice small changes, and the inability on days to complete the simple tasks I had always done.  That would come and go.  It wasn’t consistent.  One day being able to change a light bulb and the next time I would try, my hands would fail me.  Afraid to admit the decline was beginning, I never mentioned it to Maura, but I know she was watching waiting to step in.

Maura started to notice my good days and bad days, and I would see her instinctively change our plans and schedule.  She and the kids would jump in and help me the same way that my players had each others’ backs on the field.  I fondly remember the loving moments of my two girls helping me in the morning button my shirt, though those moments were bittersweet.  Isn’t it me that is supposed to help them?  My newfound clumsiness was beginning to literally be the elephant in the room, and ironically, the locker room was where it decided to expose itself.  We had just lost a well fought game and had to catch the team plane.  I had spent all of my energy on the field, and there was nothing left my body would give me.  With my hands unable to steady themselves, I couldn’t button my shirt.  A task so simple, mastered at age 5, was now gone.  My weaknesses were completely exposed, and there I was unable to get dressed on my own.  Russell noticed.  He came over and helped me in silence, like Maura or the girls would do.  I didn’t really realize that players had watched this painful process for me.   Players were always a part of our family, but here I realized that now I was a part of theirs.  This moment was the turning point in my life and changed how I was going to address my very existing condition.

My pride was out the window.  The people that I was hoping to make a difference in their lives, were watching it unfold.  Would my players still respect me?  Would I still have a job?  All those fears that I had pushed to the back came flooding to the surface.  I was afraid to tell Maura, afraid that she would think less of me as her husband, less of me as a parent.  Instead they dug in and helped secure my dignity in their own ways.  All the years of preaching perseverance was paying off.

My disease continues to progress despite the fight we rally.  I cannot count the things I’ve lost.  That list is extensive but I prefer to take the lead from another legendary coach, Tom Landry – I’ve learned that something constructive comes from every defeat – and now, I am blessed with the things that I have gained.  My path may have changed course from where I started, but I am grateful that it has not hit a dead-end.

Our Toothless Wonder

Simple life changes can seem monumental.

We have had quite a few ups and downs and the best way we know how, we try to maintain steady.

However….

Our youngest lost her first, whiter than white, tooth and I have been in a tail spin ever since.  Her age of innocence giving way to the right of passage of growing up, one pearly white at a time.

She was overjoyed from the first wiggle. Teasing it everyday. Hoping against all hope that it would fall out soon – so she could securely tuck it under her pillow case with a note.  A note about how long she has “waited” for this moment. Coupled with a thank you and promises that she will maintain all her teeth the same way.

Dear Tooth Fairy,

That precious smile, now exaggerated cuteness, with the hole front in center, almost never came to be.

That smile.....so glad we did!

That smile…..so glad we did!

Don and I struggled with fertility for 4 years after the birth of our eldest.

In Vitro Fertilization and Parkinsons are two words that are rarely combined. In the later part of my 30’s we were dealing with both issues. After being gifted a child and realizing we could maybe do this “parenting” thing, we attempted for another. We tried…insert failure…. and tried…..insert disappointment ….. and tried…..insert grief……and tried….insert devastation. What was wrong with us (really) me? How could I be a failure at something that we waited for the “right” time to happen? Immediately I learned the true meaning of the gift. After four late stage miscarriages we dove in to the science of baby making. Being Catholic, this was something we never discussed. My sweet mother, by all terms, gold medaled in the olympics of childbirth. She conceived 12 children. So how could I struggle?

The science of it all wasn’t quite adding up either.  In the midst of our third attempt at IVF, we sat in a neurologist office, just after a reproductive appointment, and heard, for the first time, the word Parkinson’s.  Don stopped in his tracks, understandably, immediately questioned the doctor about having another child.  His quote was “You have to believe there will be a cure in your lifetime.  If it were me, I would still try”.  That cycle failed- we heard, screaming louder than ever, the words again. “I am sorry you’re not pregnant.”

You would think that would have been game, set match.  Most people said to take joy in the family we already had and count our blessings. BUT something so powerful propelled us to keep pushing forward.  Most would believe that some higher being was trying to tell us something. Given our new challenge, progression of the disease and future uncertain, we thought… no. Really, truth be told, we thought ……hell NO!  We will move forward. We will preserver.  We refused to live scared. Then after many long discussions we added another reason to keep trying. We wouldn’t want Libby to have to deal with Parkinson’s by herself.  That seemed like a lot of pressure.  So, with the odds stacked against us, we tried again.  Don at this time had moved to Raleigh to begin his tenure at NC State.  Libby and I stayed in Boston, filling our days with doctor appointments, blood checks and ritualistic self injected IVF shots.

It was finally time for the “transfer”.  We had already been down this road before, with hallowed results, so I told Don he needn’t travel for the procedure.  Understandably, I had prepared us for more of the same. The disappointment was routine at this point.

The doctor implanted two fertilized eggs and the wait game continued.

This time, we heard there WAS a viable heartbeat.

Haddie Hospital

Faith in all good was restored.

When that toothless smile entered the world, we had more hope than I could ever put into words.  In the face of the unforeseeable things that were happening, we had a beacon of light and love. United together, an unbreakable bond,  Horton’s.  For those of you that haven’t met us, 4 people who will not let our lives be defined by anyone or disease.

and…… when Hadley asks about how it is she came into this world, we exclaim with the most guttural sincerity, you couldn’t have been wanted more.