Doug McCullough was raised on a dairy farm in Pennsylvania and now resides in Central New Jersey. He is a self-described “fun-loving guy.” “I take my work seriously but don’t take myself too seriously,” shared Doug. Doug has been working at Johnson & Johnson for 20 years. He also has SMA Type 3 and is […]
Community Spotlight: Doug McCullough Read More »
Ten-year-old Brady Chan from North Carolina has big goals that stem from his passion for video games. He is part of an e-gaming team, where his favorite games include “Brawl Starts” and “Overwatch.” In the future, Brady hopes to become an engineer and create his own video games. He is already learning to code! Brady and his younger brother, Lucas, also love to travel, and Brady hopes to visit France and Japan. “We are always
Community Spotlight: Chan Family Read More »
In honor of National Volunteer Month in April, Cure SMA has shared stories and quotes from volunteers who support our programs and further grow our community. Cure SMA is incredibly grateful for the volunteers who keep this organization strong. Elizabeth Lockwood is a grandmother. Her grandchildren are Emma and Nick, both young adults with spinal muscular atrophy (SMA). Like most in the community, Elizabeth had
Community Spotlight: Elizabeth Lockwood Read More »
In honor of National Volunteer Month in April, Cure SMA is sharing stories and quotes from volunteers who support our programs and further grow our community. Cure SMA is incredibly grateful for the volunteers who keep this organization strong. You might know Nick Farrell as the newest Chairperson of the Cure SMA Board of Directors.
Community Spotlight: Nick Farrell Read More »
February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative—we have been posting stories about SMA community members, showcasing their greatest passions, hobbies, and tidbits of their life. Viola Dwyer is from a suburb of Philadelphia and recently pivoted from her corporate job in the financial sector to creating a
Community Spotlight: I am…Viola Dwyer Read More »
February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative—we will be posting stories about SMA community members, showcasing their greatest passions, hobbies, and tidbits of their life. This guest post is written by Jessica Hoefler whose daughter, Piper, passed away in May 2020, shortly after being diagnosed with SMA
Jessica’s Story: Remembering Piper Grace Read More »
February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative — we will be posting stories about SMA community members, showcasing their greatest passions, hobbies and tidbits of their life. Kelsey Roberts is a determined, kind, and passionate 18-year-old from Massachusetts. As a teenager, she was diagnosed with spinal muscular
Community Spotlight: I Am…Kelsey Roberts Read More »
Brian Chiorello is a Principal Service Delivery Manager at a financial services company near where he lives in Orlando, FL. He resides there with his wife and 3-year-old daughter. In the early 1990s, Brian had plans to join the Navy, but things changed when a naval doctor suspected something was not quite right. “His suspicions
Community Spotlight: Brian Chiorello Read More »
High school sweethearts, Steven and Amy Hoskin, and their 19-month-old son, Grayson, reside outside Sacramento, CA. Steven describes them as a goofy bunch, always playing practical jokes on each other. Grayson is quick to acclimate to his family’s cheerful demeanor and loves to join in on the silliness. Grayson has been through a lot for
Community Spotlight: The Hoskin Family Read More »
Nikki McIntosh is known as the founder of Rare Mamas, an online resource that supports and empowers mothers who have children with rare diseases. She and her husband, Tony, live in Southern California with their sons Mason, age 10, and Miles, age 8. But less than a decade ago, Nikki was a marketing executive and,
Community Spotlight: Nikki McIntosh Read More »
