Ethan Pyles is one of the toughest 14 year olds on the planet! He lives with his mom Sandra and older brother Mitchell in Pennsylvania. At a very young age, Ethan was diagnosed with Duchennes Muscular Dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. There is currently no cure for DMD, but Ethan is playing a huge part in finding one.
Duchennes is one of the most common types of muscular dystrophy. It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. DMD primarily affects males with symptoms typically starting between the ages of 3 and 5. It is estimated that about 1 in 3,500 boys are born with DMD. Although it is a genetic disorder, Duchennes can develop without any family history of the disease. There are currently several clinical research trials seeking a cure, one of which Ethan is involved in.
In 2015, Ethan’s mother was given the opportunity to have him participate in a brand new research program through Kennedy Krieger Institute in Baltimore. Ethan, being only 12 years old, pleaded with his mother knowing that this could make such a difference and even save his friends lives. He has to receive weekly infusions through a port in his chest, as well as travel to Columbus, OH for deep tissue muscle biopsies. This entire procedure is extremely painful and time consuming, but it is paying off! Recently the drug Ethan has been receiving, known as ExondyS51, was approved for commercial use.
Over the past few months, Ethan’s mom started looking into purchasing a wheelchair accessible van. They recently received wonderful news from the Jett foundation based out of Massachusetts. They agreed to match any funds raised up to $15,000 towards the purchase of their new vehicle.
You can visit Ethan’s page to learn more about his story or to make a donation by clicking here.
The National Multiple Sclerosis Society has had very strong start to the third annual MS Awareness Month. Their “Together We Are Stronger” campaign, a continuation of last year’s theme, encourages people living with MS to share their breakthrough stories. The purpose of this is to show examples of strength and courage to live the best life possible, with the hopes of inspiring the millions of people living with MS.
Anyone can visit the MS Together We Are Stronger page and upload their own inspirational story or view the messages and photos that have been posted by others. We have selected just a few of our favorites that you can read below.
I am LIVING with MS…this is my shirt from this years Walk MS. My life has changed…and for the BETTER since my diagnosis. Did I want MS? No. But I wouldn’t change it for the fact that I’m a better person NOW! I’m a healthier person NOW. I’m a stronger person NOW! I live harder! I love stronger. I AM #strongerthanms
After months of tests, a neurologist diagnosed me with Multiple Sclerosis in May of 2008. As I sat there in his office with my mom, he explained what the disease was. He said there currently wasn’t a cure – and he handed me a packet about the daily injections I was about to start.
I kept a smile on my face when I told my family and friends I had MS. I didn’t want them to worry, even though I was terrified. Finally, a month later, I broke. I sobbed. I screamed. I was so angry. Why me? I remember sobbing into my moms chest as she hugged me and told me I would never have to handle this alone. That was the last day I ever asked: why me?
I have an amazing support system. My family. Ryan. My friends. My coworkers. You… Listening every morning and allowing me to share my story.
I now know why me. I’m strong enough to handle this. And the support I receive on a daily basis keeps me going. And I am stronger than MS. #WeAreStrongerThanMS
Rock Steady Boxing is empowering people all around the world with Parkinson’s to fight back! Their non-profit organization has over 300 gyms where people living with Parkinson’s can participate in non-contact boxing fitness classes. Parkinson’s disease is a degenerative movement disorder which can cause deterioration of motor skills, balance, speech and sensory function. It is estimated that over a million people in the United States are living with the disease and another 60,000 are diagnosed annually. With over 16,000 active members using their program, Rock Steady is fighting back!
About Rock Steady
The first Rock Steady gym was founded in 2006 by Scott Newman, a Prosecutor from Indiana who was diagnosed with Parkinson’s at the age of 40. There were several studies done in the 1980’s and 90’s that showed rigorous exercise, balance and core strength can help improve range of motion and flexibility for anyone living with the disease. Scott Newman found this to be true and set off on a mission to grow Rock Steady to a National organization.
They recently celebrated their tenth anniversary as well as opening international locations and even publishing a book “I Am Rock Steady”, which focuses on how 11 different people’s lives have been changed by Rock Steady Boxing. Their website even includes a store with boxing/mobility related clothes and accessories. A few months ago, Rock Steady received a generous donation from the Sallie Mae Fund and plans to help support monthly educational seminars.
If you or someone you know are interested in joining their gym or finding more information visit www.rocksteadyboxing.org.
When it comes to wheelchairs, scooters and other hybrid mobility devices, the industry is always coming up with new ideas. The unique options below are just a few examples that made our list to include in this article. Check out MobilityWorks’ selection of newer wheelchairs and mobility devices that you have to see.
WHILL Model ‘M’ Wheelchair
The Whill has been making waves in the mobility industry, especially with the Model M’s recent FDA approval. This beautiful wheelchair moves effortlessly with you to fit into your lifestyle. This chair is the world’s only mobility device to feature both 4 wheel drive and all directional wheels so that you can have high power over any terrain. Users will enjoy a smooth ride. You can even control the Whill remotely from a smart phone app!
The Rip Chair is the ultimate off road chair and the only setup that accepts your existing chair, according to their website. This wheelchair is the perfect choice for wheelchair users who love the outdoors. You can add hand controls, cup holders, gun racks, fishing rod holders and more to customize your rip chair. You will enjoy the power and durability of this outdoor machine.
Pendel Mobility Scooter
The Pendel Mobility Scooter allows users to travel independently with your wheelchair. The Pendel is a fast alternative to a bike or taxi. In addition, the scooter is electric powered for a comfortable and smooth ride.
Standing Power Wheelchair
The Redman Power Chair allows users to stand, recline, tilt and stretch, offering you a new form of independence. This device is designed for comfort and flexibility so that you will never miss a moment. Redman even allows you to request an in home demo.
Scavelo-The Stair Climbing Chair
The Scavelo wheelchair was designed by students at a Swiss university. This wheelchair will allow users to climb stairs on a Segway-like device. Two rubber tracks are mounted at the bottom of the chair.
Ultra Long Distance Wheelchair
The Ultra Long Distance wheelchair is a great choice for long distance athletes. Many racing devices are only meant for shorter distances. The designer formed this chair to help athletes keep up their efforts over marathon distances using modern technology.
The Rota Scooter moves forward by the user pushing and pulling the central lever. Users will enjoy the efficiency and accessibility of the design. Since the wheels are below the scooter, you will experience an easier transfer with less strain on your wrists and hands. Rota products are some of the easiest manual devices to use.
TEK Robotic Mobilization Device
The TEK is a unique device that lets users board from the back and stand up. Users can bring the device closer with a remote control and then transfer to the chair. The TEK allows individuals with mobility challenges to move independently in the world.
Created by a combat veteran, the tankchair is an excellent choice for outdoor activities. The one-piece chassis offers confidence over any terrain. The durable rubber track system will work in all weather.
Cursum Adaptive Stroller
Being a new parent is challenging enough. Mobility difficulties can add more obstacles along the way. The Cursum Adaptive Stroller works with your wheelchair to give parents added security and extra independence.
It’s still in prototype phase, but the underwater wheelchair has already allowed one artist with mobility challenges to scuba dive. This mobility device is powered by two dive propulsion vehicles and steers with a fin.
You have many choices when it comes to your mobility independence. MobilityWorks offers countless wheelchair accessible vehicles to fit every need. Whether you’re looking for a side or rear entry van, foldout or in-floor ramp, hand controls and more, we’ll be there for you every step of the way with our huge inventory of wheelchair accessible vehicles.
Photo courtesy of WHILL Inc. — used with permission.
People with ALS and other degenerative diseases may lose their ability to speak over time, but today’s technology can give them a voice. Most of the speech technology we see has a robotic voice. What if ALS patients could get their own, personalized voice back? Thanks to message banking, they can.
Message Banking is Created
“25 years ago, one of the nurses who ran our tracheotomy program came to us and said there are kids who wake up in the ICU after surgery who are absolutely terrified and they can’t communicate,” John Costello, the creator of message banking and Director of Boston Children’s Hospital’s Augmentative Communication Program, said. “We then began to look and say, why are we waiting until a patient is at bedside and under the influence of medication, pain, sedation and fear to try to help? I thought it would be really cool if kids could record their voices pre-operatively so that post-op they could wake up with technology mounted on their bed and have their own voice.”
Thus, message banking was born.
Another option similar to message banking is voice banking. Voice banking tries to create a voice that sounds like the individual’s voice mixed with a computer. However, message banking records one’s voice before and includes phrases that are unique to an individual.
ALS Patients Use Message Banking
Several years ago, John was approached by a pathologist at an ALS clinic who realized ALS patients would benefit from the technology. The ALS clinic realized they could send patients earlier in the diagnosis stage to record more before speech abilities were lost.
One of those patients is 41-year-old Todd Quinn. Diagnosed in 2011, Todd is still able to emit funny one-liners like ‘Morning, babe’. The program has great promise for many others like Todd. Thanks to $4 million in donations, Boston Children’s Hospital is creating a program to help ALS patients get access to message banking.
To record the messages, patients like Todd get a microphone and a voice recorder. Over time, they speak into it whenever they think of words and phrases they will want to use in the future. The messages are stored and patients use eye-tracking technology to activate them when their speech is gone.
One ALS patient recorded herself singing very badly because she was known for annoying her friends with her singing. Another recorded his favorite way to greet his wife, ‘What’s cookin’ good lookin?’ These are messages that woudn’t be on a traditional communication device but truly show the individual’s personality.
Todd wishes he had saved more messages but he is happy for the ones he banked.
“It’s very easy to lose sight of the person that I used to be,” Todd Quinn said, “but with the message banking, it allows us to hold on to that.”
Editor’s note: Approximately 30,000 people in the U.S. are currently living with amyotrophic lateral sclerosis (ALS), a disease that progressively affects nerve cells in the brain and spinal cord. Eventually, ALS robs people of the ability to move and speak.