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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.

USS Arizona Survivors Visit Washington DC

Lauren Bruner, Ken Potts and Donald Stratton are three of the five remaining survivors of the USS Arizona. During a recent visit to Washington DC they attended a formal wreath laying ceremony at the Tomb of the Unknown Soldier. The men were honored with a certificate and a coin from the Old Guard Third Infantry Regiment, who guard the tomb.

The survivors were also able to visit the World War II, Korean, and Vietnam Memorials. They spent time at the Pentagon and met with President Trump in the Oval Office.

More importantly, they came to Washington DC to lobby for the Navy Cross to be posthumously awarded to Joe George, the man responsible for saving both Bruner and Stratton, when the USS Arizona was attacked.

MobilityWorks was very happy to donate the use of 3 wheelchair vans to these amazing men and their families, so that they could travel easily around the city.  

The USS Arizona

The USS Arizona was attacked in Pearl Harbor on December 7th, 1941. The USS Arizona remains where she sank in Pearl Harbor, as a Memorial to the lives lost that day. For more information please visit:   http://www.ussarizona.org/

Photos courtesy http://www.ussarizona.org

MobilityWorks Cycle Team Sets Goal of Raising $25k for Buckeye MS Ride

Team 1* is shown here in 2016 getting ready for the Brunswick Breakaway Challenge.

The MobilityWorks 1* cycle team will be participating in the Buckeye Break Away Challenge for the 12th year.  Though small, they are a powerful force in their quest to beat MS, finishing as a top 10 fundraising team each year they have participated.  Collectively, the team has raised over $200,000.   For this year’s MS Society ride, they’ve set a lofty goal of raising $25,000 and could use your help.  Consider joining them with donation for their ride. Good luck Team 1*!

Donate to the MS Society Team 1* page here.

About Bike MS

 
If you like including some rolling hills on your ride, Bike MS Buckeye Breakaway is the ride for you! The ride starts in Brunswick with riders traveling 30, 62, 75, or 100 scenic country miles. Riders continuing on the two day rider will overnight at Ashland University where they will be provided dinner, activities, and an overnight party with live music in Team Village. Riders finish back in Brunswick on Sunday after a 75 mile ride.
 

Ride Details:

Date(s): August 5-6, 2017
Start/Finish Location: Brunswick High School
Fundraising Minimum: $300
Age Minimum: 12

Get More Buckeye Breakaway Information Here.

The National Multiple Sclerosis Society is a qualified 501(c)(3) tax-exempt organization.

37th Annual National Veterans Wheelchair Games

The 37th Annual National Veterans Wheelchair Games is right around the corner. The games are being held in Cincinnati, Ohio from July 17th to July 22nd, 2017. Local Cincinnati venues where most of the events are being held include: Duke Energy Convention Center; Stargel Stadium; Fairfield Sportsmen’s Association; and the Powel Crosley Jr YMCA. There are 19 different sports to watch and attendance is free.

The games will also feature a Kids Day on the 19th for children with disabilities in the Cincinnati area.

Co-presented by the Department of Veterans Affairs and Paralyzed Veterans of America (PVA), athletes from all over the United States will be participating in the games. Any veteran with a spinal cord injury, Multiple Sclerosis, amputations and other neurological injuries that uses a wheelchair for sport, and is eligible for care through the VA, can participate!

While in town enjoying the games, stop at the Recreation & Fitness Expo located at the Duke Energy Center, Booth #129 on Monday, July 17th. We will have an exhibit, and look forward to seeing you.

To learn more about the NVWG and how to volunteer click here.