Layla

Day 21 of 30 Days of MD’s story is Betty Vertin. She lives in Nebraska with a big family. Three of her sons are living with Duchenne muscular dystrophy (DMD). Their names are Max, 15, Rowen, 12, and Charlie, 10.

The boys are living full lives. Our oldest is an active high school student participating in theater and music, and held down a summer…[Read more]

Day 16 of 30 Days of MD
Topic: Making and Giving Away Sourdough Bread Is My Jam

Todays story is about Lisa D’Andrea.

Six decades of living with Bethlem myopathy have taught me to doggedly pursue the things that make me happy. Being mobility-impaired has made me an expert in finding fun in the things that are in my immediate surroundings. When…

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In this 30 Days of MD post, Dominic Marabello shares how fitness gave him the strength to push forward through his MD diagnoses. Dominic was diagnosed with myotonic dystrophy (DM1).

“My passion for fitness, coupled with MD, inspired me to motivate and educate others through YouTube. As a personal trainer, a number of my clients have their own…

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In this 30 Days of MD post, Kristina Kelly shares her story about her time as a healthcare coordinator at the Muscular Dystrophy Association (MDA). She met with patients and their families to see if the MDA could offer support such as loaner equipment or information on summer camp.  She also offered support during times of grief for families. It…[Read more]

Day 2 of 30 Days of MD is Matt DeEmilio’s story! He is the coordinator for disability support services at Coastal Carolina Community College. Matt and I worked together on a workshop about ableism that we presented to the faculty and staff. Matt has a great understanding of approaching individuals with disabilities, what ableism is, and the stigma…[Read more]

Light It Up Purple

More than 125 landmarks worldwide were being bathed in purple light Thursday night, recognizing the world’s 1.2 billion people with disabilities.

The event, a call for inclusion and equal treatment, came as the Paralympics began in Tokyo next week. “Purple has long been associated with the disability community,” the…[Read more]

Hi MD Family! I was hoping to get some help with surveys that I need input from you all! If you have any questions feel free to reach out to me. Other than that, if you could take some of the surveys that apply to you, it would be so helpful for the future of my friend’s accessibility certification business! He is doing important work for the…[Read more]

National Bargain Hunting Week was the second week in August is recognized as National Bargain Hunting week! Bargain hunting can be everything from flea market shopping, thrift store hunts, the clearance rack at a department store, and more. Do you bargain hunt? Where do you go? Flea markets, thrifting, antique malls, yard sales? Do you re-seal things?

Article: Medical Marijuana Now Legal on Cherokee Land in Western NC

If you live in a state with medical marijuana legalized and you use it, how has it been for you? Does your condition qualify for medical cannabis use? Were you unsure, or did you feel unsafe to use it? Did cannabis affect other medications? What were the side effects, if…[Read more]

Article: CRISPR Gene Editing Journey
“Gene editing has the potential to change the lives of people with severe and life-threatening genetic ailments, including Duchenne muscular dystrophy, Hemophilia A, and Sickle cell disease (SCD) by correcting “spelling mistakes” inside the human genome”.

If you have been following CRISPR for a few years now…[Read more]

Have you heard of mindfulness? It can help develop a resilient mind, especially for those with chronic diseases or illnesses. For example, you can wake up feeling great and full of life one day, but you feel alone, insecure, and afraid the next morning. Training your mind is straightforward, but putting those practices into daily exercise and…[Read more]

Have you ever considered LASIK eye surgery? Lasik s a type of refractive surgery for the correction of myopia, hyperopia, and astigmatism. Both of my parents had LASIK surgery, and although they had to rest and be cautious a few days after surgery, they are happy with their decision. However, sometimes I find my glasses to be annoying. I have…[Read more]

<p style=”text-align: left;”>The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications and access to state and local government’ programs and services. How have you benefited from the ADA? If you love in a…[Read more]

I don’t carry too many coins in my wallet because I think unnecessary weight is added to my bag. However, I sometimes fumble with coins and find it difficult to handle and pass to another person. I have collected change over the year but don’t know if I can successfully roll coins anymore. How do you deal with pocket changes or coins? Do you have…[Read more]

I received a bill from Numotion for my Corpus M# powerchai, and it was $1200. To say I was shocked was an understatement. A month or so ago, I was told that I could use new casters and, with the age of my battery, a new one as well. I agreed to this, and after waiting for some time, they finally scheduled an appointment for me, and 30 minutes…[Read more]

Have you used any forms of public transportation where you live since the pandemic? What was it like for you? I flew on an airplane in January, and everyone still had masks. I did not have my vaccine yet, and we were still very cautious. Now seven months later, I want to make travel plans, but I wonder what it will be like to share a public…[Read more]