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MDA Quest Media Product Guide

Welcome to the MDA Quest Media Product Guide! This guide is designed to help you find tried-and-true products that make life more independent, stylish, and fun. All of the products that you see here were chosen by MDA Ambassadors, who shared exactly how each product helps them in their daily lives.

This is a resource we have curated because we LOVE you and because we LOVE things that make your life just a little easier.

 

Summer Shopping List

These thoughtfully selected products are used and recommended by MDA Ambassadors to make travel, summertime outings, home accessibility, and day-to-day activities more independent and adaptive.

Meet Our Ambassadors

Click on the buttons to read all about them and their favorite life hacks.

Bennett

Bennett R.

Ambassador Bio:

Bennett lives with Duchenne muscular dystrophy (DMD). Duchenne is a part of his story, but it does not define him. He is full of bravery, strength, and resilience. We share his journey to raise awareness, push for research, and fight for a future where kids like Bennett get the chance to live long, wonderful lives full of adventure.

FAVORITE LIFE-HACK:

Save energy for what matters. Energy is limited with Duchenne, even when it doesn’t always look like it on the outside. The goal is to quietly remove unnecessary effort throughout the day so Bennett can still fully show up for the good stuff.

Bennett R.
Chase

Chase R.

Ambassador Bio:

Chase was 13 years old when he was diagnosed with Friedreich’s ataxia muscular dystrophy (FSHD). He says he was in a state of total denial at first. He felt healthy and looked healthy. It made no sense to him that he was being diagnosed with a neuromuscular disease. However, Chase eventually found the strength to move forward, thanks to the MDA for reminding him that I am not alone. Now, he is a college graduate and writer, doing things that he had thought he would never do, making new friends, and making memories. Chase hopes to be able to share his story with others and let them know that they are never alone and that their future is bright.

FAVORITE LIFE-HACK:

My favorite life hack is taking full advantage of Smart Home technology! Rather than treating it as some gimmick, I try to find new ways to incorporate it into my everyday life and make things easier.

Chase R.
Doug

Doug C.

Ambassador Bio:

Receiving the diagnosis of ALS was hard. Knowing there is no cure and death usually occurs within 2-5 years is not what most people want to hear. I was diagnosed on April 8, 2014 and I’ve been fortunate. I am in the 5-10% who live 10 years or longer. Looking back, we know that I had the disease at least a year prior to the diagnosis. That said, the years living with ALS have been the best years of my life. I have always been a positive guy, looking for the good and not the bad. I recognize that many others don’t have that type of outlook, especially living with a diagnosis of ALS. I have chosen to advocate, inform, encourage and be a resource to those affected by ALS.

 

Doug C.
Grace B

Grace B.

Ambassador Bio:

Grace was diagnosed with Charcot-Marie-Tooth disease (CMT) right before her 16th birthday; however, her journey with CMT started way before that. By fifth grade, she was the kid on the sidelines, watching others run and jump while she wondered why she couldn’t do that too. When her diagnosis finally came, it gave Grace even more of a purpose to help others like her. Grace’s mission starts with education and proving that youth voices deserve a seat at every table that shapes our future. She am the co-founder of Pathly.com, a youth-led education platform giving students real tools, guidance, and community to shape futures that fit who they are, not who the system expects them to be. CMT may slow her down, but it’s the reason she keeps moving forward. Grace says she doesn’t do it for the titles or applause, she does it for the kid sitting out of the game, wondering why they don’t fit in. The MDA reminds her - and them - that they do belong. That our difference is our strength.

FAVORITE LIFE-HACKS:

My favorite life hack is keeping a simple “future log” where I do one small thing each day that helps my future self, whether it’s getting ahead on work, organizing something, or taking care of my health. It builds consistency without feeling overwhelming.

Grace B.
Holly

Holly N.

Ambassador Bio:

From a young age, Holly knew she was different from other kids around her. She didn’t know exactly what condition she had until she got genetic testing and was diagnosed with Bethlem myopathy. Even though Holly had lived with limited mobility most of her life, she never let it stop her from doing incredible things - from activities and hobbies to travel. She is always looking for new adventures, whether it’s going on ziplines and roller coasters or traveling to foreign countries. As Holly has gotten older, her mobility has decreased but she is still determined to live an adventure-filled life and to keep finding ways to explore, learn, and grow. She wants people to know that having disabilities and limitations does not have to stop you from reaching your dreams. Your determination and perseverance can get you anywhere you want to be.

FAVORITE LIFE-HACK:

My favorite life hack is using rubber bands to help me open containers! Having at least one rubber band on me at all times helps in any situation where I need to open a bottle or jar, it is especially helpful for my fellow avid Dr. Pepper drinkers. 

Holly N.
Janna L 1

Janna L.

Ambassador Bio:

Janna lives with spinal muscular atrophy (SMA). Diagnosed as an infant, she has used a wheelchair her entire life, but has never let her condition prevent her from living fully. She is passionate about spreading awareness and advocating for SMA through her YouTube channel “SMAVoices”. MDA Summer Camp, which she attended for 7 years, was a transformative part of Janna’s life. In her free time, she enjoys being with family and friends (especially her five nieces and nephews), tailgating for LSU football games, shopping, and continuing her advocacy work for the SMA community.

FAVORITE LIFE-HACK:

My favorite life hack is sleeping on silk sheets.  It makes it so much easier for people to turn me over because I slide easier.  I also bring them when I travel to make turning easier.

Janna L.
Mel

Mel D.

Bio:

Mel lives with Charcot-Marie-Tooth disease (CMT) Type 1A and LZTR1-Related Schwannomatosis. These diseases have shaped her journey in ways that have taught her resilience, patience, and the importance of community. MDA has been a source of support, understanding, and connection, and being part of this community means so much to her. Outside of advocacy, Mel’s greatest joy comes from spending time with her husband, her son, and their two cats. She believes that even in the face of challenges, our stories have the power to inspire change, build connection, and remind others that strength comes in many forms, and no one has to walk this journey alone.

FAVORITE LIFE-HACK:

My favorite life hack is turning a cupcake into a sandwich. Just break off the bottom and place it on top of the frosting.

Mel D.
Paige 2

Paige W.

Bio:

Paige first started noticing muscle issues around 2015. She was told she was fine and dismissed by multiple physicians until she received genetic testing due to a heart muscle disease. This opened up doors for Paige to be able to see other physicians who realized that her heart muscle along with other muscles were compromised. This realization led to her receiving a diagnosis of limb-girdle muscular dystrophy (LGMD). Paige love movies, going to the pool, getting ice cream with her godchildren, and going out to dinner with friends. She wants people to see someone who looks like them and to know it’s okay to advocate and stick up for yourself and ask for what you need.

FAVORITE LIFE-HACK:

My favorite life hack is using a label maker and labeling bins and closet dividers for my clothes so that my home health aide or caregiver can easily understand my system and help me put away clothes and items.

Paige W.

This Season’s Favorites

Our MDA Ambassadors have curated a brand-new set of their favorite products for you to check out. Consider them your personal shoppers and check out their recommendations below for innovative ways to enhance independence and make life a little more accessible in style.

Portable Urinal Bags

Recommended by: Doug C.

These travel urinals have an ingredient that absorbs and deodorizes urine. They are flat so they don’t take up a lot of space in my bag.

Professional Mister System

Recommended by: Doug C.

With ALS and spinal cord injury, I have a hard time in the heat. This system effectively cools an outdoor area and I can sit on our patio even on hot days.

Shampoo in a Bag

Recommended by: Doug C.

I use these during hospital stays and at home, particularly at times it isn’t convenient to get in the shower to wash my hair. Quick and easy!

Smart Light Bulb

Recommended by: Chase R.

I use this with an Amazon Echo and it makes turning off the lights simple. You can either ask Alexa or turn off the bulb via your phone!

Sketchers Slip-Ins

Recommended by: Chase R.

These come in a variety of designs in both men and women’s sizes. No hassling with laces, just slip them on and you’re ready to go.

Wall-Mounted Mirror

Recommended by: Chase R.

This makes it easier for shave and would be great for skincare. It has a built-in light. It easily attaches to the wall and extends outward to adjust as needed

Amazon Kindle

Recommended by: Chase R.

For bookworms like me, being able to carry around multiple books in one light item is great. And I can change font size and adjust backlight for easier reading.

Amazon Echo Dot

Recommended by: Chase R.

Using this makes documenting daily tasks and tracking weather changes a breeze! It’s completely hands-free; just say or ask whatever you want!

Deuter Hiking Pack

Recommended by: Bennett R.

With this carrier, we experience incredible outings together. It makes our adventures possible. Being able to carry Bennett up the mountains is a game changer.

The Fitlife Trekking Poles

Recommended by: Bennett R.

Fitlife trekking poles make it possible for Bennett to hike in some areas without being carried.

Columbia Elastic Pants

Recommended by: Bennett R.

These elastic pants make life much easier for Bennett! They help with independence in dressing and toileting.

Inflatable Travel Footrest

Recommended by: Bennett R.

We use this inflatable travel footrest in the car so that Bennett’s feet do not have to dangle, making travel more comfortable for him.

Nutricost Electrolytes Powder

Recommended by: Bennett R.

This is a must. Being at risk of muscle dehydration is a serious medical condition and we feel more confident in activities when we have electrolytes on hand!