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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

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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:

Jett Foundation Helps Tampa Family with Accessible Van

Scott Shelby, MobilityWorks of Tampa General Manager, congratulates Joe Wilcher and his son Austin.
Scott Shelby, MobilityWorks of Tampa General Manager, congratulates Joe Wilcher and his son Austin at our Tampa Florida store.

MobilityWorks was proud to be a part of the recent work done by the The Jett Foundation to help out a Tampa military family in need.

Austin Wilcher, a 12-year-old with Duchenne Muscular Dystrophy, needs to use a power wheelchair or scooter for his mobility. In order to get Austin around from place to place, his father John, an active duty member of the military and single father,  needed to buy a van that he could ride the scooter up and inside the vehicle with the use of a wheelchair ramp. Fortunately, MobilityWorks of Tampa had the right van that met all of their travel needs. Forrest Bateman, the MobilityWorks Certified Mobility Consultant, then worked with Joe and Austin to make sure all of the equipment would be a perfect fit to keep Austin mobile and safe.

The family raised half of the funds needed to purchase an accessible van through donations on their First Giving Page. The Jett Giving Fund then matched the remaining 50 percent of the cost of the vehicle.

“This van will help me transport Austin safely and efficiently, and allow him more independence,” said Joe Wilcher. “Raising a son with Duchenne as a single Dad is difficult, and expensive.”

Congratulations Austin… and thank you Joe for your service in our military!

Fox 13 Tampa Captures the Moment

The Fox 13 News team came to MobilityWorks and reported on the Wilcher van donation in their 5/9/2017 newscast. Click on the You Tube video arrow below to view the news segment.

About Jett Foundation

Through the Jett Giving Fund, Jett Foundation partners with families affected by Duchenne to help ease the financial burden of medical and transportation equipment.

Since 2001, Jett Foundation, located in Kingston, MA, has worked to find treatments and a cure for Duchenne muscular dystrophy while improving the lives of those affected by Duchenne. Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax deductible.

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!