Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.
Living with a rare genetic disease like Stickler syndrome (Or “Sticklers”) isn’t a death sentence. If Emily Katharine wants people to know one thing, that’s it: that they are more…
In a late December 2022 news release from biopharmaceutical company Altimmune, Inc., the company shared that positive topline data was available from a 24-week study—including a 12-week extension—which evaluated…
Throughout his professional career, Marcus Stewart played in over 500 soccer games, scored more than 250 goals, and played at clubs including Ipswich Town, Sunderland, Bristol City, Exeter City, and…
Right now, there are only an estimated 10 people in Ireland who have been diagnosed with a form of mucopolysaccharidosis type I (MPS I) called Hurler syndrome. This is the…
Nipah virus was first discovered in 1999 following an outbreak in people and pigs in Malayasia in Singapore. Since then, the zoonotic disease has spread, causing nearly annual outbreaks in…
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…
The coronavirus pandemic has significantly altered not just the world we live in, but the way we engage within this new world. It has been difficult and isolating to…
High-risk neuroblastoma can be difficult to treat in children. Some research suggests that between 40-50% of children with high-risk neuroblastoma relapse following treatment, causing poor outcomes. When Flora Gentleman was…
When Charlotte Harris was born, she seemed - for all intents and purposes - to be a healthy infant. But her mother Melissa became concerned about a potential health issue…
Trigeminal neuralgia is characterized by intense and debilitating chronic pain affecting one side of the face. Currently, there are a number of treatment options to reduce pain: tricyclic antidepressants, anticonvulsants,…
It has historically been difficult to encourage the development of therapies for patients with rare diseases. To overcome this, the Orphan Drug Act was passed in 1983. This act…
On January 7th, the Jacksonville Jaguars and Tennessee Titans faced off on the football field. With just 2:51 left in the game, Josh Allen returned a fumble for a touchdown,…
25-year-old Maia Stock was excited at the chance to get away from snowy Canada and bask in the warmth of the Puerto Vallarta sun—relaxing at the resort, swimming in the…
Have you ever heard of Orphan Drug designation? This designation is granted by the U.S. Food and Drug Administration (FDA) to drugs or biologics intended to diagnose, prevent, or…
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…
Prematurity and formula-feeding heighten the risk of necrotizing enterocolitis (NEC), a serious gastrointestinal issue. However, NEC is still poorly understood; in many cases, the exact cause is still unknown.…
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…
Have you ever heard of a natural history study? In short, a natural history study studies people who have, or are at risk of developing, a specific medical condition;…
There is no cure for multiple sclerosis (MS). However, treatment advances have helped people to live longer, happier lives. Current therapeutic options include corticosteroids, plasmapheresis, and disease-modifying drugs. Recently,…
In 2020, the U.S. FDA granted Orphan Drug designation to KB407, an investigational gene therapy for patients with cystic fibrosis (CF). More recently, at the start of 2023, the…
Seven years ago, David and Amber Negele married. The pair couldn’t wait to begin their blissful wedded life together. Just a few years after their marriage, David and Amber decided…
From November 10-14, 2022, various stakeholders within the rheumatology sphere connected at the American College of Rheumatology’s (ACR) Convergence 2022. During ACR Convergence, described as the world’s premier rheumatology experience,…
A January 2023 news release from biopharmaceutical company Avidity Biosciences, Inc. ("Avidity") shares that the company's therapy, AOC 1020, earned Fast Track designation from the FDA for the treatment of…
Currently, the standards-of-care for lupus include anti-malarial drugs such as hydroxychloroquine, corticosteroids and immune-suppressive therapies, and biologics such as Benlysta. But new therapies are urgently needed, especially as anywhere between…
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