For those stricken with muscular dystrophy --- a group of diseases causing progressive loss of muscle mass --- a feeling of despair can emerge and family members unprepared can often feel overwhelmed.
The disease, which equates to abnormal mutations of human genes, has no cure and causes most stricken with the cruel disease to need help standing and sitting up-right.
But the Muscular Dystrophy Association Arizona is there to help those stricken and the ones who love them with a level of care and compassion second to none.
“MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases,” said Muscular Dystrophy Association Executive Director Sarah Levin. “This is broken down into two pillars of focus --- innovations in science and innovation in care.”
Ms. Levin offers insights to the pillars of focus of care at MDA Arizona.
“Innovation in science includes an investment of $1.4 billion in research, using technology to build a data hub that uniquely aggregates healthcare, genetic and patient-reported data and accelerates drug development,” she said. “These investments are directly linked to the approved, life-changing therapies for those living with muscular dystrophy.”
Those grant dollars are offering brighter horizons every day for those battling and living with a muscular dystrophy diagnosis.
“Innovations in Care includes Care Centers that span the country,” she said.
“In Arizona alone, we have four clinics that provide best-in-class, comprehensive care at the hospitals in the state. We have resources and life enrichment programs available to our clients. These include summer camp for kids aged 7-17, recreational activities, one-to-one-support specialist and an equipment loan program.”
The MDA Arizona effort helps those afflicted with all variations of the cruel disease, Ms. Levin explains.
“There are 43 different forms of muscle disease,” she said. “They affect children and adults. The common factor is muscle deterioration. With that, basic movement is often restricted. Many of our clients are in wheelchairs and face limitations. We are there to ensure they live a life with little barriers.”
One of the programs at MDA Arizona includes a summer camp and youth outreach program where those dealing with muscular dystrophy can enjoy a camp experience free of charge.
But to shoulder those costs, Ms. Levin explains, comes, in part, from Fiesta Bowl Charities. In fact, this year alone, Fiesta Bowl Charities offered a $50,000 grant that goes directly toward the camp and youth outreach program.
“The grant dollars from the Fiesta Bowl were used to support the MDA Arizona Summer Camp and Youth Outreach programs,” she said.
“Every year, we send approximately 100 kids to camp at no cost to the family. In addition, we plan several events to bring campers together through the year to see their friends, and build self-esteem. The MDA Camp program is a life-changing experience for our kids. They have a week with no limitation, meet new friends, build confidence and self-esteem that lasts a lifetime. If you ask our campers they will tell you it is the best week of the year for them.”
For Kristina Chumpol, Fiesta Bowl Charities community relations director, the commitment to MDA Arizona is a keystone of the charity arm surrounding cherished college football games.
“Fiesta Bowl Charities is committed enhancing organizations that support this great community,” she said. “Organizations like MDA are the heart of our communities and the work they are doing is so important. Fiesta Bowl Charities is proud to support MDA and we look forward to seeing their life-changing work.”
Ms. Levin also points out the camp experience serves more than just those living with muscular dystrophy.
“In addition, camp gives the caregiver a break and the opportunity to focus on themselves, a spouse or other children,” she said.
“I have been with MDA for 14 years and the impact I have seen is far greater than I can put into words. The families have a support system, kids with muscle disease don’t feel alone, we are developing drugs for treatment and our clients are living longer and stronger!”
Ms. Chumpol contends grant dollars at work oftentimes transcend budget lines.
“The staff at MDA are dedicated to providing not only hope for the families they come in contact with but also much-needed answers and support. MDA truly becomes a safe haven for these families,” she said.
“Grant dollars provide critical funding for the programs and initiatives for this organization. The team at MDA are champions for the families they serve but they need the funding to be able to make the work come together.”
Go to mda.org.