MDA Fundraising Campaign
From: Jay Willis, Vice President of Sales, Mometrix Test Preparation
Dear Friend,
Thank you for your interest in Mometrix products!
You probably came to our site to order study materials, but first, if you will indulge me, I'd like to tell you about my family's personal journey with muscular dystrophy.
I don’t like to ask for help. Neither does my nineteen-year-old son, Benjamin, who has muscular dystrophy. While he can’t run, jump, or even stand up, he has the determination to do as much as he can by himself. What I’ve learned from Benjamin is that there are some things you just can’t do by yourself, that’s why I’m asking for your help. Let me tell you our story.
Before the Diagnosis
Benjamin was born in the summer of 2006, and we couldn’t have been more excited to welcome him into our home. All of the sleepless nights and diaper changes were small inconveniences we gladly accepted as we adjusted to life with a newborn.
For the first 18 months, Benjamin developed just like most other children. We watched as Benjamin learned to smile, laugh, sit up, crawl, and walk at the expected pace. We took as many pictures as we could (just like most first-time parents) and enjoyed every stage of his development. We couldn’t have been more excited about our child and were looking forward to all of the things we would be able to do together as a family in the years to come.
It wasn’t until just after Benjamin’s second birthday that we noticed something was wrong. He had trouble getting up from the floor and was falling a lot. He also started missing some developmental milestones. We tried to dismiss it and assumed his balance and strength would improve as he got older. It wasn’t until two different pediatric nurses suggested we take him to a neurologist that we started to think his condition was not improving.
The Diagnosis and the Cure
The neurologist confirmed our deepest fear—Benjamin had muscular dystrophy. What the neurologist initially thought might be Duchenne turned out to be spinal muscular atrophy (both types of muscular dystrophy). In an instant, the hope that Benjamin would have a normal childhood was gone. From that moment on, we knew his childhood would look a lot different from other children. He would have more challenges, he would be left out, and we didn’t know what all he would and wouldn’t be able to do. All of my dreams of getting to do normal father-son activities like teaching him how to play sports or hiking with him went out the window. We didn’t know what his life would look like anymore, but we knew it would look a lot different.
Since that day we have learned a lot about the many forms of muscular dystrophy and about spinal muscular atrophy (SMA). To put it simply, Benjamin lacks the ability to produce a specific protein his body needs in order to keep the communication flowing between his brain and his muscles. Children with spinal muscular atrophy typically experience muscle atrophy because the signal from their brain does not make it to their muscles. In other words, the prognosis was a gradual loss of strength and abilities for the rest of his life, and we, his parents, could do nothing but watch it happen. It was the most devastating news we had ever received.
From that day forward, we began praying for a cure, watching each day as he grew weaker.
We waited for years, thinking it would never happen. Then one day, after years of research—much of it funded by the Muscular Dystrophy Association (MDA)—a treatment was approved by the FDA on December 23, 2016 that would stop the progression of SMA: a spinal injection of a drug called Spinraza administered every 4 months…for $125,000 per injection.
Naturally, we didn’t have $125,000 lying around. But after months of battling with the pharmacy, the hospital, and our insurance, we were able to get Benjamin’s first injection at Texas Children’s Blue Bird Clinic—a clinic sponsored by MDA, the first place in Texas to offer the drug after FDA approval. Since then, Benjamin has stopped getting weaker. He hasn’t lost any abilities since April 25, 2017, and has even gained a little bit of strength.
Today, Benjamin is a college student at one of the biggest universities in the United States. Not only is he a student at Texas A&M, but he is studying engineering, one of the most challenging fields of study.
MDA Camp
Every summer, camps across the United States allow MDA to hold a camp for children with neuromuscular disorders like muscular dystrophy, like sSpinal Muscular Atrophy. From the ages of 6-18, children who normally left out from many activities - at school, on the playground, even at home - get to be normal for a week and do all of the activities (riding a zip line, canoeing, rock climbing, horseback riding, archery, giant rope swing just to name a few). Their parents drop them off, and volunteers take care of these children for the whole week.
I am, by self-admission, an overprotective parent, and my child having a disability certainly doesn’t help with that. So when people with MDA kept telling me I should leave him at camp with strangers for a week, I thought “sure…that’s a great thing for other families… but that’s not for us.”
This was before we went to a conference for people in all stages of life with Benjamin’s condition. At one point during this conference, there was a panel of successful, independent adults with this condition: a lawyer, an entrepreneur, and a world-traveler, just to name a few. They were asked the question “What gave you the confidence to go out and be this successful?” All but one of these panelists said that MDA Camp was the number one reason they had the confidence to be so independent and successful in life - and the one panelist who did not credit MDA Camp said that her parents were overprotective and didn’t allow her to go, and that it was her biggest regret in life.
After that guilt-ridden experience, we reluctantly let him go to MDA Camp. For us, it was one of the most stressful weeks of our lives. For him, it was one of his best. The very first thing he said when I picked him up was, “Can I come back next year?” By far it was one of the most exciting weeks of his life up to that point…even better than going to Disney World!
But don't take my word for it, listen to him talk about it himself in the video below!
The Impact of MDA Camp
In addition to MDA Camp being a time when a kid can just be a normal kid, it teaches disabled children how to communicate their needs to people who don’t know them nearly as well as their parents. That’s what gives them the confidence to become independent.
Without MDA Camp, we never would have believed it was possible for Benjamin to attend college three hours from home. He wouldn’t have learned how to communicate his needs to complete strangers or have gained the confidence to believe he could live independently.
Today, he’s living his dream - studying engineering with honors at one of the top engineering schools in the country.
MDA Camp gave him what he needed to fulfill his dream, and now he wants to give back to the disability community.
Giving Back
Since 2022, he has served on the Texas Governor’s Committee on People with Disabilities. Earlier this year, he served as the MDA Ambassador for CITGO Petroleum Corporation’s 40th Annual Golf Classic Tournament, one of the largest fundraisers in the country for MDA. He’s studying and specializing in automotive engineering at Texas A&M to design more affordable accessible vehicles. In fact, he wrote part of this article himself to share what MDA has done for him.
And now we want to encourage you to give back as well. I’m willing to share Benjamin’s story with you because we need your help. Mometrix is sponsoring me to raise money for the Muscular Dystrophy Association (MDA) and will donate a percentage of sales that come through my division this month.
We are grateful that Benjamin’s condition is mild compared to children with other, more severe forms of muscular dystrophy. Knowing the medical expenses we face, I can only imagine what families of children with more severe forms of muscular dystrophy endure - fighting every day to keep their precious child alive, holding onto hope that a cure will come in time.
Every dollar given to MDA moves that hope closer to reality. It helps fund life-changing research, supports the MDA Camps that build confidence and independence in these children, and provides critical resources for families like ours.
We couldn’t have made it this far without MDA. Now, we’re asking you to help them continue this life-changing work for others.
How You Can Help
Please don't buy anything if you don't need it, but if you or someone you know is looking to take a standardized exam within the next year, please visit our catalog or use the search box above to see if we have any study materials that might be of help. Using the study materials for the GRE (before working for the company), I improved my score by 200 points. Ultimately the quality of their test-prep material is what brought me to work for the company three years later.
We have study materials for over 1,000 different standardized exams, including:
- College Entrance Exams (ACT, SAT, ACCUPLACER, CLEP, AP)
- Teacher Certification Exams (Praxis, TExES, CSET, FTCE, GACE, MTTC, NYSTCE)
- Medical/Nursing Exams (TEAS, HESI, NCLEX, ARDMS, CNS)
- Insurance Exams (Property & Casualty, Life & Health)
- Financial Exams (Series 3, 6, 7, 24, 30, 63, 65, 66, and 87)
- Dental Exams (CDA, NBDE, Orthodontic)
- Military Exams (ASVAB, DSST)
- Graduate & Professional School Exams (GRE, MAT, MCAT, GMAT)
If you do not know anyone who has a standardized exam coming up within the next year, please consider giving directly to MDA to help Benjamin and others like him who have muscular dystrophy. Any amount will help, even if it’s just $5.
If you were looking to purchase study materials from Mometrix, but had planned to wait until later this year, please consider making your purchase this month instead.
While it may not seem like one person can make a difference, if we all thought that way, nothing significant would ever be accomplished. Since 2011, we have raised over $100,000 for MDA and hope to make 2025 our best year ever by being part of MDA's mission to change people's lives!
Thank you for taking the time to read about our story.
Thanks, Gig 'Em, and God bless!
