Ovarian cancer is the most deadly form of reproductive organ cancers. Why? Because it's usually not diagnosed until it has reached the late stages because the symptoms are often overlooked,…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies,…
There is no way to prepare yourself to hear that your child has an incurable rare disease. After the initial shock of learning that their child will most likely die…
The 2017 Suburban Chevrolet Ann Arbor Goddess 5K and Mile Fun Run will be held on Mother’s Day, this Sunday, May 14th. The race is not only to celebrate women,…
Carl Rooney has seen everything SMA Support UK has done for his younger brother, Daniel. That's why he's running 2,107 miles. Carl is from an English town called St. Ives, and…
At the Myasthenia Gravis Foundation of America’s annual conference this year, Kathryn Rodriguez (pictured above with her husband Alexis) led some incredible breakout sessions for the caregivers/loved ones of those…
Friday was an incredibly important day. Yes, it was Cinco De Mayo, but it was also the first time the FDA has approved a treatment for ALS (Lou Gehrig’s Disease) in…
There are few things more frightening and horrifying for a new parent than being told that their child has a lifelong medical disorder. Perhaps the only words that could make…
At the 2017 MGFA conference a panel consisting of Bruce Yelverton (Myasthenia gravis [MG] patient and retired paramedic and EMS director), Sally O'Meara (MG patient and registered nurse), and Shannon…
1. On Thursday, June 1st at 12 pm EST, 11 am central, there will be a seminar by the Amyloidosis Foundation to better understand this complex disease. It will be narrated by two physicians from…
A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…
Ever since Andrew Wakefield and his cohorts published an article in The Lancet that warned of the measles, mumps, and rubella vaccine being linked to autism and bowel obstructions, the…
Marijuana use is certainly controversial and a debated topic. But what's less debatable is the progress of the movement to legalize and embrace it American society - especially for medicinal use.…
For most of us, a nice stroll in the woods is a leisurely activity for relaxing or light cardio. But for disease ecologist Richard Ostfeld, a walk in the New York…
Primary immunodeficiency diseases (PI) weaken the body's immune system, leaving patients prone to infections. In very mild cases, the person may not even know they have PI, but in other…
San Diego is rumored to have one of the nicest climates in the United States. From what I've heard, it's a balmy 72 degrees almost year-round, and the sky is…
Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…
Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…
I donate blood whenever I can. Is it a fun-time activity? Nope. Let's face it: Nobody likes to get stuck with a needle. So why do I bother? I donate because other…
Do you have VASCULITIS? Associated with: Behcet’s Disease, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis), Hpersensitivity Vasculitis (Leukocytoclastic), IgA Vasculitis (Henoch-Schönlein Purpura), Kawasaki…
Stephen Mitchell was losing his fight with IPF about five years ago. He began running because he did not want to die of a lung disease, like his father. Although…
May 15th is TSC Global Awareness Day! Tuberous Sclerosis Complex (TSC) is defined as an inherited disorder that causes tumors to develop in vital organs. One million people worldwide are…
A few days ago on April 10, 2017, a terrible tragedy took place in San Bernadino, California. An angry gunman entered a special education classroom in North Park Elementary School and…
Mark your calendars because World Parkinson's Day is here!! Winter is (mostly) over and spring is hot (emphasis on hot) on it's heels! And, of course, April showers means we're…
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