Barbara Ochoa is a dedicated Support Group Facilitator whose journey with myotonic dystrophy (DM) has shaped her commitment to helping others. In this interview, conducted in March 2025 by MDF’s Senior Manager of Community Engagement, Lucie Shiffman, Barbara shares how her family’s diagnostic journey inspired her to give back to the DM community.
A Life in Motion
After spending a lifetime in Southern California, Barbara now enjoys settling into her new home in Northern California. In her free time, she loves reading, journaling, and caring for her family’s many farm animals, including alpacas, chickens, ducks, donkeys, and more.
In 2024, Barbara took on the role of an MDF Support Group Facilitator (SGF)—a trained volunteer who leads virtual or in-person gatherings for people affected by DM—alongside co-facilitator Rose Albanese for the Southern California Regional Support Group, now known as the California Regional Support Group. When asked why she chose to volunteer as a peer leader, Barbara explained that it was an easy decision. She wanted to be there for others living with DM, or for parents caring for children with DM.
The Road to a Myotonic Dystrophy Diagnosis
This desire to help stems from Barbara’s own experience when her family was first diagnosed. Like many, Barbara’s family went through a series of misdiagnoses before finally discovering they had DM. It began when her youngest daughter, Sammy, was born in the early 2000s and diagnosed with cerebral palsy. The family didn’t question this diagnosis until years later, when Barbara, in her 30s, started experiencing a range of symptoms, including cataracts and muscle loss.
Coming from a family that loved spending time outdoors—hiking, boating, and more—this sudden change was difficult to manage. Her doctors initially assumed it was perimenopause. A few months later, they performed an EKG and mistakenly assumed she had previously suffered a heart attack, which she had not.
Finally, after spending time on the river and being unable to get into her family’s boat, Barbara realized she needed to return to her doctors for more answers. During this process, she requested her father’s death certificate from over 20 years earlier and saw that it listed myotonic dystrophy as the cause of death, following cardiac arrest. This led her to pursue genetic testing, which revealed that Sammy, now a young adult, had also been misdiagnosed at birth.
Finding Community with MDF
Barbara recalls a turning point when she found the Myotonic Dystrophy Foundation’s Warmline. “I was overwhelmed and unsure where to turn,” Barbara remembers. “I saw that the foundation had a Warmline for newly diagnosed individuals, and I knew that was for me.” She picked up the phone and was met with compassion. “I spoke with a really kind man, who listened, sent me a packet of information, and connected me to a support group. It felt like someone finally understood.”
“That phone call gave me direction, validation, and hope. It was the moment I realized I wasn’t alone in this.” – Barbara Ochoa
Now, in her role as an SGF, Barbara is able to offer that same support to new community members. She aims to connect individuals to the foundation’s resources and ensure they feel empowered to advocate for their care at the doctor’s office.
Paying It Forward
Join the next California Support Group on May 18th, facilitated by Barbara Ochoa and Rose Albanese! They meet every other month at 1:30 PM Pacific Time. Learn more about the California Myotonic Dystrophy Support Group!
If you or someone you love was recently diagnosed with DM, you don’t have to navigate it alone. Reach out to the MDF Warmline or find a local myotonic dystrophy support group near you.
Inspired by Barbara’s story? Explore how to become a Support Group Facilitator or make a contribution to make a difference in the DM community.
Acknowledging our California Community Leaders
Special thanks to Dr. Leslie Krongold, who helped design MDF's first support groups and launched the Northern CA group; Lorraine Dressler, who founded the Southern CA Support Group; and Rashid Kassir, who led the in-person San Diego group. Their leadership paved the way for peer support across California—a legacy Barbara is proud to carry forward.
About the SGF Program
MDF's Support Group Facilitator (SGF) Program trains volunteers to lead local or virtual support groups for individuals and families affected by myotonic dystrophy. SGFs create safe spaces to share resources, provide emotional support, and strengthen the DM community. Explore our more than 20 regional and national support groups!