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Mary’s Magical Place

Photo from Mary’s Magical Place: https://www.facebook.com/Marys-Magical-Place-819307848185951/

Mary Elizabeth McAuley was a very special young woman who touched the lives of many in the town of Hendersonville, Tennessee. People all over the Northeast suburb of Nashville knew Mary for her radiant smile and positive attitude that was so strong, it was practically contagious. Due to complications at birth, Mary was born with cerebral palsy and epilepsy. Unfortunately, Mary passed away in 2015, but in honor of her memory her family is raising funds to construct a state-of-the-art inclusive playground where all of Mary’s friends can play.

Mary’s parents Tommy and Rachel have been very creative when it comes to fundraising by hosting several events and working with local businesses. They have partnered with Middle Tennessee Audiology, who is donating $5 from every hearing test towards the playground. In addition, the family has organized a half-marathon, started a memorial brick drive and have secured sponsorship from several local companies. One of their biggest contributions for the playground came from winning the USA Today’s “A Community Thrives” grant contest. The $50,000 award helped put Mary’s Magical Place fundraising above their initial goal.

The playground will feature several wheelchair accessible pieces of equipment including a swing that doesn’t require children to transfer from their manual or power wheelchair, a roundabout style “Ability Whril” and a “Sway Fun Glider”. Other thoughtful inclusive features at Mary’s Magical Place include a musical instrument display, sign language mural, braille boards and sensory items for children with autism.

The city of Hendersonville has already set aside several acres of land in Veterans Park for the inclusive playground and has agreed to keep up with maintenance after construction is completed. The city will bid out the project later this year and hope to have the playground completed by May of 2018.

If you are interested in learning more about Mary’s Magical Place and keeping up-to-date with their progress please visit www.marysmagicalplace.org They are also still accepting memorial brick donations starting at $125.

Top 10 Wheelchair Halloween Costumes

For the past several years, we have noticed there have been some incredibly creative costumes that have been designed and constructed by people using wheelchairs. We have seen everything from scary to silly, and some that are absolutely stunning! With a few weeks left before Halloween, we decided to put
together a list of our ten favorite costumes from past years, and we look forward to seeing what everyone dreams up later this month.

Mini Bulldozer Bobcat – Not only is this idea creative, but look at all the room he has for carrying candy!

DJ Booth – You are definitely going to be the life of the party if you come dressed as a DJ

Anything Star Wars – There are plenty of options for Star Wars fanatics from R2D2 to any of the space ships

Game of Thrones – We expect to see several “Iron Thrones” this year inspired by the popular HBO series and top-selling fiction series

Drummer – This could be a great cheap costume, or you could really go over the top

Cinderella’s Carriage – The perfect costume for your princess

Back to The Future – The Delorean will always be a cool costume

Wheel of Fortune – Here is a good costume if you’re looking to put something together last minute

UFO – A great idea if you are looking for something a little scary

Hot Air Balloon –This was made from burlap, rope, a beach ball, and lots of glue and tape

Hike to Mount Everest Base Camp, explore Nepal, and help end a rare form of muscular dystrophy.

2015 ETED team – Chris Balch, Gregg Kaloust, Anna Johnston, Tonya Dreher, Dave Welton, Kent Annis and Brian Stoudnour

Article reposted with permission from Hope for Gus.

Hikers, outdoor enthusiasts and climbers of all skill levels are invited to join the Everest to End Duchenne team on its second trek to Mount Everest Base Camp on September 25. The 2017 trek is part of a symbolic journey that represents what boys battling Duchenne muscular dystrophy (referred to as both DMD or Duchenne), face every day as their muscles lose function. The effort supports the Hope for Gus Foundation, a non-profit organization that raises funds for medical research for DMD.

“We are determined to find a treatment or a cure for my son Gus and thousands of kids just like him,” said Tonya Dreher of Peterborough, New Hampshire, who started Hope for Gus and its Everest to End Duchenne trek in 2010 after learning of Gus’ DMD diagnosis. “I decided to challenge myself and anyone else who is touched by Duchenne with something that would be difficult for us, but impossible for Gus to ever do.”

Duchenne is a fatal, terminal, muscle-wasting genetic disorder, affecting one in 3,500 boys born each year. By age 12, most boys with DMD are in wheelchairs. They rarely live past their mid-20s. At present, there is no cure or effective treatment, but there is hope, as several promising new treatments, specifically in the field of gene therapy, are being developed. One such therapy, a gene editing technology called CRISPR, has potential to cure not just Duchenne, but many other genetic disorders.

The first Everest to End Duchenne trek in 2015 was the Hope for Gus organization’s highest grossing fundraiser ever, which is why the organization will embark on its next trek on September 25. All funds raised with this trek will directly fund medical research. In addition, a GoFundMe campaign has been launched and sponsorship opportunities associated with the hike are also available.

To be part of the 2017 trek, you must be 18 or older (unless accompanied by a parent or guardian), be reasonably fit and able to walk five to eight hours a day, possess an adventuresome spirit and desire to make a difference. The 120-km, 17-day journey begins in Kathmandu and includes an exploration of Nepalese culture, visits to traditional villages, Buddhist mountain monasteries and bazaars, and culminates with the arrival to Everest Base Camp, high in the Himalayas, more than 18,000 feet above sea level. Although a demanding journey not meant for the faint of heart, trekkers need not be elite athletes or experienced climbers to complete or enjoy the journey. Participants are required to raise a minimum of $1,000 and are also responsible for individual travel expenses.

Gus is currently part of a clinical trial testing a treatment drug that may give the Dreher family more time together as doctors search for a cure, but Gus continues to lose muscle function, and time is of the essence.

“Duchenne is devastating and will slowly take away all of Gus’ muscle function, and eventually end his life, if we do not find an effective treatment or a cure in time.” Dreher said. “We embark on the second trek to EBC with renewed energy to raise twice as much money for medical research for DMD and to symbolically bring children who suffer from DMD to the rooftop of the world with us.”

This year’s team is creating a flag to wave at Base Camp with the names of nearly 1,000 people who are either living with, or have lost their lives to Duchenne. They will carry this flag with them for the entire journey, as a symbol of trekking for those who cannot and carrying them to the rooftop of the world, a journey that their own bodies could never take.

To learn more about Hope for Gus or becoming a part of the 2017 Everest to End Duchenne trek, email info@hopeforgus.org. The sign-up period closes Friday, August 11.

The Jett Foundation Celebrates Their 6th Jett Giving Fund Success

MobilityWorks was happy to join in the celebration with The Jett Foundation as they celebrated their 6th Jett Giving Fund success by gifting Liam McGourty and his family with a new wheelchair accessible minivan.

11-year old Liam McGourty was born with Duchenne muscular dystrophy, and is mostly confined to a power chair. With a handicap accessible van, Liam can now safely and easily travel to doctor’s appointments, friend’s houses, school, and family events.

After the McGourty family, with the help of their local community, raised half the cost of the handicap accessible van for the Jett Giving Fund, Jett Foundation matched those funds and gifted the van to Liam and his family.

The Jett Giving Fund is a matching gift program that helps families affected by Duchenne who struggle to afford special equipment often not covered under insurance, such as handicap accessible vehicles, scooters, and rotating beds.

To learn more about the Jett Giving Fund and how you can help more kids like Liam get the equipment they need, please visit https://www.jettfoundation.org/jett-giving-fund/

Check out Liams reaction to his new ride in this video.

Family Raises Money to Purchase Over 500 Wheelchairs

Zack's-Shack-640

Eight years ago a determined first grader opened up “Zack’s Shack”, a lemonade and cookie stand, with the hopes of raising around $85 to donate one wheelchair. He’s far exceeded that initial goal, managing to raise over $75,000 to purchase more than 500 wheelchairs! As Zack prepares to enter high school, he is handing over the reins to his younger sister Helen. She will carry on the family business in the form of “Helen’s Hut”.

Over the years Zack’s Shack has gained National media attention from several outlets including People Magazine and The Huffington Post. He even received large donations from Steve Harvey and a grant from State Farm’s Neighborhood Assist program. Zack started his own website www.itfeelsgreattogive.com to receive donations from those who couldn’t make it to the stand. One of the biggest challenges has been that the cost of the wheelchair has more than doubled since the first year. As he prepares to begin high school in the fall, Zack is excited to participate in sports, new activities and look for another exciting charitable project to get involved with.

Looking back on the past 8 years, his parents Nancy and Danny are amazed at what their son has been able to accomplish. They can still remember counting up the money after the second year of the stand and explaining to Zack that he needed to deduct his future expenses to run the stand the following spring. This left Zack the cost of one wheelchair short of his goal, so he ran up to his room and emptied his piggy bank to purchase the last wheelchair. Today Zack will tell anyone “It takes money to make money”.

This past year Zack and his sister worked together, but next spring it will be all 7 year old Helen’s responsibilities and she is excited for the task. She plans to add a bell to ring for service and her favorite color pink to the stand.

We wish Helen the best of luck and look forward to seeing all of the success she will have in the future. If you are ever near Provo, Utah around spring break make sure to stop by and grab some cookies and lemonade!

Check out the video below to learn more about Zack’s story: