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This is How We Roll Fashion Show

fashion_show_fittedEarlier this month the Bryon Riesch Paralysis Foundation held their 4th annual “This is How We Roll Fashion Show”. The event was held just outside of Milwaukee, WI where almost 40 models, ranging in age from 5 to 70, showed off some of the latest trends in fashion. Current Miss Wisconsin winner Courtney Pelot and local celebrity Luke Bebeau hosted the show that was attended by almost 300 people.  This was their largest amount raised to date with over $35,000 being donated to help fund research as well as support the local community.

In 1998, while attending Marquette University, Bryon was injured in a car accident that left him paralyzed from the chest down. Following the accident, his family and friends pulled together to put on a fundraiser that would help with Bryon’s medical costs. This inspired Bryon to form the nonprofit in 2001, that over the past 16 years has raised over $4 million dollars towards the fight against paralysis.  Every year they award research grants to some of the brightest minds and best research facilities in the United States. They also help individuals in the local community with the cost of adaptive equipment, as well as scholarships for college tuition.

Bryon Riesch puts on several other annual events including a golf outing, bowling tournament and a team race for kids. He initially organized the fashion show to bring attention to issues such as inclusion, medical research and improving accessibility. As his organization continues to grow and gain national media attention Bryon is looking forward to helping even more individuals and researchers.

Check out the video below to see some of the “This is How We Roll Fashion Show”

Ethan Battles Duchennes Muscular Dystrophy

Ethan-PylesEthan 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.

Life Changing Experiences at Victory Junction

VictoryJunction-FishingChildren shine at Victory Junction. Free from the confines of their disease, illness or disability, they discover that they can be a kid! How does this happen? Victory Junction has created a medically safe, yet exhilarating camp, that challenges children who have a serious medical condition to try things they never imagined possible.

Their program provides a week of summer camp for children at no cost to the camper’s family. They stay in comfortable air conditioned cabins, eat at the Fuel Stop (which meets all dietary restrictions), and enjoy program areas which include: a zipline, indoor sports center, theater, arts and crafts, boating/fishing, and even a water park. As they enjoy the activities children build confidence that shape how they view the rest of their lives. Once children arrive at Victory Junction, the boundaries and limitations they live with on a daily basis disappear and they simply concentrate on having fun!

History of Victory Junction

In 1999, a lanky, wide-smiling teenager visited a Paul Newman SeriousFun Camp in Florida (Boggy Creek) with his Dad and knew it was his calling to bring a similar camp to the hills of North Carolina where he grew up. This young man was up and coming race driver Adam Petty, son of NASCAR driver Kyle Petty, grandson of racing legend, Richard Petty and great grandson of NASCAR pioneer, Lee Petty. Adam not only had a passion for racing, but a passion for helping others.

One year after his touching experience visiting children at Camp Boggy Creek, Adam Petty tragically lost his life in a racing accident. To honor his memory, the Petty family set out to build Adam’s dream. With land donated by Richard and Lynda Petty, their family spearheaded a capital campaign in 2002 and received donations from corporations, individuals and foundations to build Victory Junction, a NASCAR-themed summer camp ninety minutes from Charlotte. In June 2004, Adam’s legacy of love was realized when Victory Junction opened its gates to campers.

Victory Junction is still accepting applications for this summer, click here to apply to come to camp, or click here if you are interested in becoming a volunteer.

New Jersey Town Raises Funds for Accessible Van

Makayla-BlogThe city of Fair Lawn, New Jersey is a special place with a tight knit community. One of their residents, a young girl named Makayla, just received a new accessible van from MobilityWorks thanks to support from her town. The fundraisers were sponsored by a local company, United Real Estate, and several generous donations were made by local families. Even the mayor was involved and he was very excited to see Makalya’s new van. When the van was ready to be handed over, local reporter Wayne Robbins came out to film an edition of “Inside Fair Lawn”.

You can check out his video below:

The MobilityWorks  of Farmingdale team and Certified Mobility Consultant Donald Dufty were honored to be able to help such a wonderful family. Also a special thanks to everyone in Fair Lawn who helped Makayla receive her new accessible van!

Tyler’s Road to Recovery

TylerBissonTyler has always been eager to get up and go! He has participated in basketball, football, track and is a certified scuba diver. Those who love Tyler have always struggled to keep up with his energy. Unfortunately, this past summer, Tyler was involved in a devastating car crash that has left him paralyzed.

On this past Father’s Day, Tyler and his sister were rear-ended by a distracted driver, sending them both to the hospital. Tyler suffered massive head trauma, and has been in and out of hospitals and rehab centers ever since. He is unable to talk or eat on his own, but has been making progress.

Tyler has been home for a little over a month now.  He’s tolerated a “tea party” with his little sister.  He’s watched familiar movies and television, and listened to his music.

The time at home has been some of Tyler’s most attentive and alert since the crash.  He has been awake more often and for longer periods of time.  He smiles several times a week.  Sometimes, he has looked in the direction of somebody talking to him from across the room.  On occasion, he’s squeezed his mom’s hand when asked to do so.  Tyler’s rehabilitation is focused on exactly these kind of things with the ultimate goal that Tyler will be able to communicate with us.

Like everyone else, as spring comes, Tyler’s family has their eyes on the outdoors.  They want to get Tyler out into the community at parks, beaches, and to see family and friends.  Currently, they do not have the ability to transport Tyler to do any of this.  Even getting to doctors’ appointments — both scheduled and emergency — requires a herculean effort.  Only an ambulance provider transports patients as medically complex as Tyler.

Tyler needs his own van, and one that can fit the entire family. Anything you can do to make this a reality is deeply appreciated by his family. To learn more or help in Tyler’s road to recovery you can visit his GoFundMe page here.

If you or someone you know is raising funds towards the purchase of an accessible vehicle, feel free to email us at marketing@mobilityworks.com and we would be happy to promote your campaign on our community site.