It's safe to say that Gabe Barajas has never been afraid of a challenge. In fact, he embraces challenges - and the excitement and adventure they bring to his life.…
Walks are a great way to raise awareness and money for a cause, and they're also good for exercising and spending some time with friends and family. Recently, the Southwest…
Since its founding in 2009, The Assistance Fund (TAF), an independent charitable patient assistance organization, has helped patients and families within the rare disease and chronic illness sphere with financial…
When Emily McGuyre first discovered that she was pregnant, she was thrilled. She greatly looked forward to bringing her son, Matthew, into her family. But, shares The Hawkeye, Emily learned…
In 2015, Luke and Hayleigh Tate welcomed their daughter Maisy-Leigh into the world. However, following an emergency C-section, Maisy-Leigh was taken into critical care. The doctors noticed a number of…
Seven years ago, at just 15 years old, Lauren Blake was diagnosed with gastroparesis. This condition makes it difficult for Lauren to keep down her meals or, really, to eat…
After two years of in vitro fertilization treatments, Amber Freed, Age 38, and her husband Mark Freed of Denver, Colorado welcomed their twin babies Riley and Maxwell into the world.…
24-year-old Georgia Hughes was concerned when she noticed that her son Myles, age 3, had missing teeth. After a number of doctor visits and MRIs, Myles was diagnosed with 4H…
In 2019, Connor Dobbyn, now 13, was diagnosed with Sanfilippo syndrome type C, also known as mucopolysaccharidosis III (MPS III). After his diagnosis, his parents came to recognize that there…
Colorado is a beautiful state for fly fishing, and it attracts many people who love the sport. A group of anglers from this state has joined together, united by both…
A Tyler, Tx artist, mother, wife, and friend has her community rallying behind her in her fight against oligodendroglioma, a primary central nervous system cancer. According to the Tyler Morning…
In 2019, Mike Smith, a father of two, was initially diagnosed with ocular melanoma in his right eye. Shortly after, Mike made the necessary - but difficult - decision to…
In August 2021 News Center Maine ran an article introducing former British army Major Chris Brannigan. Brannigan, forty-one years old, was prepared to do anything to help his daughter Hasti,…
When AJ Blinn, now age 12, was just 8 years old, his parents noticed something potentially concerning. As AJ was walking around, he was also limping. Eventually, his parents took…
Every game, the men of Northwestern Football leave the tunnel to a sign with an important reminder: “trust yourself.” Each player touches that sign before they head to the field,…
Every year, there are numerous unique ways to get involved in the rare disease community and help raise awareness. One example? The Harvest Hope for PWS event -- a virtual…
Rare disease therapies are often difficult to access, whether that is due to price, a patient's location, or another factor. Because of these obstacles, many rare disease patients find themselves…
When Rhonda Stevey met her grandson, Koehyn, she was immediately smitten. The grandmother, who lives in Ohio, felt like her grandson was the happiest infant she had ever met. Unfortunately,…
Paul Williamson has always been a fiercely proud father and an advocate for the rare disease community. His son James was born with Smith-Magenis syndrome (SMS), a rare genetic developmental…
The Child Growth Foundation (CGF) is a leading UK charity which supports families, adults, and children with rare growth conditions such as SHOX deficiency, Silver Russell Syndrome, and Sotos syndrome.…
What would you do to support your child? Would you take on a daunting 100 kilometer (62 mile) run? According to the Daily Record, a mother and her friends in…
I don’t know about you, but I always get incredibly happy when I see stories about a community rallying to support one of its own members. For example, those in…
Many rare diseases face issues when it comes to awareness, we know this. Low patient populations, minimal research, and little knowledge all contribute to this problem. One father aims to…
The Munson family is fundraising to make changes to their home, as these adaptations will make life easier for their two children Oscar and his older sister Mary. This is…
Mark Dalziel has big plans for this weekend; he's going to bike the length of Scotland within two days. He has a very good reason for doing so, which is…
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