If you’ve ever wanted to run around Philadelphia in your underwear for a good cause, I have an event to tell you about! As first reported by the Philly…
Jenny Decker’s disease, Charcot-Marie-Tooth (CMT), is named after the three doctors who first discovered the disease in 1886. CMT is a progressive neurological disease that affects approximately 2.6…
In the past, Katie Lockwood has worked in a variety of different roles within counseling and education; she even worked as a disability advocate, championing inclusion on a larger…
Lucy Beall's parents were expecting a fairly normal and straightforward birth. But when Lucy was born, the entire room was shocked. She weighed just six pounds and her skin…
2019 was an extremely difficult year for Jay Crow. In February of that year, Crow lost his mother Megan, who was just 33 years old, to heart failure. Just…
Generalized arterial calcification of infancy (GACI) and autosomal recessive hypophosphatemia rickets type 2 (ARHR2) Awareness Day is recognized each year on Feb 1. This is a time for spreading awareness…
In a previous post, I shared what it took to heal my eosinophilic esophagitis. In this post, I share a few tasty and healthy foods, and a recipe for organic…
Doddie Aid, which begins January 1st and continues for the following six weeks, aims to encourage people to get active while raising funds to support research into motor neuron disease…
According to a story from the Rancho Santa Fe Review, 26-year-old Tyler Schutz began taking the sport of golf by storm last year. The young man made the Double Eagle…
Ashley Colburn began losing her vision in childhood and became completely blind at fourteen years old. You see, Ashley has a rare inherited disorder called von Hippel-Landau syndrome (VHL),…
423 words 10% matched vs 524 words 5% matched The Rare Diseases International Organization reports that the groundbreaking UN Resolution on Persons Living With a Rare Disease (PLWRD), effective…
Before you read on, make sure to check out: Part 1: Green Bay Packers' Shemar Jean-Charles and Los Angeles Chargers' Storm Norton talk about the importance of Alzheimer's disease awareness. …
Before you read on, make sure to check out: Part 1 of our article: Green Bay Packers' Shemar Jean-Charles and Los Angeles Chargers' Storm Norton discuss why they raise Alzheimer's disease…
Written by: Kala McWain There is no amount of time that can fully prepare you for the hard work and sacrifices it takes to be a good parent. These challenges…
Before you read on, make sure to check out Part 1 of our article. In Part 1, Green Bay Packers Cornerback Shemar Jean-Charles discusses why he supports the Alzheimer's Association and how…
Throughout his life, Gavin Miller has overcome many struggles. As a young child, Gavin always loved hockey. But when he was in a hockey program at age four, he…
The latest statistics on heart disease and its effect on Black communities are startling. According to an article in the Dallas Examiner, Black people are fifty to seventy percent more…
When the COVID-19 pandemic swept the world, nobody knew what the short- or long-term effects would be. Now, a few years into the pandemic, we’ve begun understanding some of…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
Do you wish to be heard? Recently PR Newswire announced that on the 28th of February 2023, NORD and the worldwide community of rare disorders will be raising awareness…
Written by Lisa Ann Krutzik An inexpensive and extremely valuable gift you can give your older teen or adult child this holiday season... A letter from you. I spend a…
Parents and doctors were concerned about Chuck Goodman's health from an early age. In fact, they thought he had a deadly case of childhood leukemia. At around age five, Chuck…
In recent years, treatment options for cystic fibrosis, a rare disease, have increased significantly in number and in effectiveness. However, many of the most effective treatments, developed by Vertex Pharmaceuticals,…
There is a certain time of year in which the trees change color, the air becomes crisp and we pour gravy on everything. As I am typing this, I am…
Did you know that November is National Family Caregivers Month? Celebrated annually, this month is designed to recognize the contributions of caregivers and honor their actions. In a recent…
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