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Working to Improve Public School Accessibility in NYC

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The NYC Department of Education recently announced that they will be surveying every high school to determine which buildings need accessibility improvements.  One of the biggest issues parents and students have is that “accessible” should mean more than just having someone in a wheelchair be able to enter the building. There are several things that are commonly overlooked, like whether or not are there quality accessible restrooms, water fountains and classrooms. Many of their public schools are over a hundred years old and do not have elevators or a lift system on their stairs.

Moving in the Right Direction

Often times parents have the ability to choose which school they would like their child to attend, especially if they have any physical limitations. However, with hundreds of public schools in Manhattan alone, starting the process can be extremely overwhelming. To help with transforming the schools and with providing more information online, the NYC DOE recently announced a new project that will compile a 60 criteria database on accessibility information from all of the schools. To help communicate this information to the public, they hope to make this accessibility information and any new ADA improvements on the DOE’s NYC School Finder website. There is also a mobile app called “School Central NYC” that allows users to view detailed information on over 1,500 schools.

Fully Accessible, Partially Accessible and Inaccessible…

The NYC Department of Education accessibility page currently claims they have three tiers of schools:  fully accessible, partially accessible and inaccessible. They do not however provide a list of which schools fall into these categories. In 2015, the NY Daily News posted an article claiming that 83% of the NYC schools are not fully accessible. Hopefully their future projects and renewed efforts on improving accessibility will help bring that number down.

With a new focus on improved school accessibility coming from the nation’s largest city, hopefully towns all across America decide to follow in their footsteps!

A Van for Zachary and Sam

The Tuttle family live just south of Atlanta in Newman, GA where they are raising two wonderful children. Zachary (10) and Samantha (8) are both in wheelchairs and have several medical conditions. Zachary was born with the rare condition Eagle-Barrett syndrome, also known as Prune Belly, and both children have Neurological Development Delays. This makes daily life extremely challenging for the Tuttles, but it does not stop them from enjoying every minute possible!

Only in 1 in every 40,000 children are born with Eagle-Barrett syndrome which causes partial or complete absence of abdominal muscles. There is currently no cure and very little that can be done for treatment, but medical researchers are working hard to find some answers. The Tuttle’s are doing some of their own research as to why both of their children have rare neurological conditions. They have worked with Geneticists to trace back over 6 generations from both parents, and have no explanation. While they continue to look for answers, the Tuttle’s enjoy every moment with their children.

Zachary and Sam are both non-verbal, but have recently started to learn sign language. Some research shows that teaching non-verbal children sign language can help them learn how to speak. Both children also enjoy horse therapy which is proven to help relieve stress and anxiety. One of Zachary’s favorite activities is watching the Weather Channel. Every time the music for the “local on the 8’s” comes on he gets a huge smile on his face! One of their happiest family memories is from 2013 when Zachary was selected to be a part of “Bert’s Big Adventure”. Every year Bert Weiss from Q100 in Atlanta sends several families on a week-long paid vacation to Disney World!

The Tuttle family is full of love and compassion, but they are missing one thing, a wheelchair accessible van. They are currently raising funds on GoFundMe to purchase a vehicle that will fit both kids in their wheelchairs.

Click here to visit the Tuttle’s GoFundMe page

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.