Every February, people around the United States come together to raise awareness for the leading cause of death in both men and women. President Lyndon B Johnson officially named February as heart health month in 1963, a time when heart disease was responsible for almost half of the deaths in America. Often times heart problems can be prevented, and throughout the month several organizations, including the American Heart Association, will be sharing ideas to help people make smart and healthy decisions.
Starting in the early 1950’s, when public awareness and understanding of muscular dystrophy was almost non-existent, the Muscular Dystrophy Association created their National Goodwill Ambassador program. Since that time, over 40 individuals have helped bring attention to the fight against muscular dystrophy by sharing their stories of inspiration and hope. Joe Akmakjian is the current ambassador, and throughout 2017 he has worked to raise awareness for muscular dystrophy.
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 firstname.lastname@example.org. The sign-up period closes Friday, August 11.
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*!
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.
The National Multiple Sclerosis Society is a qualified 501(c)(3) tax-exempt organization.
Ethan 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.