In the wake of Hurricane Harvey that devastated parts of Texas and Louisiana, we felt it was appropriate to share that September 5th is International Charity Day.
September 5th is recognized by the United Nations General Assembly as the International Day of Charity. The purpose of this recognized day is to help raise awareness for charity related activities all over the world for individuals and families, charitable, philanthropic and non-profit organizations whether it may be local, regional or global level.
The International Day of Charity was conceived as a Hungarian Civil Society to enhance visibility, organize special events and increase social responsibility and public support for charitable causes. The holiday was officially recognized in 2012 by the United Nations.
In honor of this recognized day, please take a moment to read more about some of the individuals and families who could use your support in achieving their dream of a wheelchair accessible van. To learn more about Abel Garcia’s story (pictured above), go to his GoFundMe page here.
Red Cross efforts continue to help those in need following Hurricane Harvey. Read more here.
The Paralyzed Veterans of America (PVA) 7th Annual Summit + Expo is being held on August 29 – 31, 2017 in National Harbor, MD. The Paralyzed Veterans of America has a long track record of helping to change lives and build brighter futures for those who live with SCI and related diseases.
This year’s focus will be Microvascular Disruption and the Potential Therapeutic Stem Cells in SCI, Gene Therapy Approach, TBI Chronic Encephalopathy and PTSD as well as the Impact of Co-Morbidity in MS.
Some of the keynote speakers include Dr. David Carroll, Executive Director in the Office of Mental Health and Suicide Prevention at the Veterans Health Administration, and Kathleen Costello, Associate Vice-President of Healthcare Access for National Multiple Sclerosis Society.
While visiting the PVA Summit Expo, please stop by MobilityWorks Booth #108. Representatives will be on hand to answer all of your wheelchair accessible transportation questions. We look forward to seeing you there!
The 2017 Boston Abilities Expo is almost here! The Expo runs from September 8th through the 10th at The Boston Convention & Exhibition Center, Hall C.
Over the past 40 years, the Abilities Expo has been a valuable resource for people with disabilities, their families, seniors, veterans and healthcare professionals.
Plan to attend a workshop while at the expo because the shops are free all day, every day! The workshops focus on topics ranging from traveling with a disability to how you can get the best accessible vehicle. Parents can even be a part of two different workshops intended for parents of kids with special needs. The workshop is intended to make you laugh and learn new ways to thrive as a parent of a child with special needs.
Make sure to stop by the MobilityWorks Booth #1022. We would like to see you and say hello! Admission is FREE.
9/8, Friday, 11am to 5pm
9/9, Saturday, 11am to 5pm
9/10, Sunday, 11am to 4pm
The Boston Convention & Exhibition Center, Hall C
415 Summer Street
Boston, MA 02210
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.
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.