{"id":12168,"date":"2025-03-21T11:22:58","date_gmt":"2025-03-21T18:22:58","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?p=12168"},"modified":"2025-12-30T11:23:59","modified_gmt":"2025-12-30T19:23:59","slug":"community-interview-barbara-ochoa-support-group-facilitator","status":"publish","type":"post","link":"https:\/\/myotonic.org\/es\/community-interview-barbara-ochoa-support-group-facilitator\/","title":{"rendered":"Community Interview: Barbara Ochoa, Support Group Facilitator"},"content":{"rendered":"
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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\u2019s Senior Manager of Community Engagement,\u00a0Lucie Shiffman<\/a>, Barbara shares how her family\u2019s diagnostic journey inspired her to give back to the DM community.<\/p>\n

A Life in Motion<\/h2>\n

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\u2019s many farm animals, including alpacas, chickens, ducks, donkeys, and more.<\/p>\n

In 2024, Barbara took on the role of an MDF Support Group Facilitator (SGF)\u2014a trained volunteer who leads virtual or in-person gatherings for people affected by DM\u2014alongside co-facilitator Rose Albanese for the Southern California Regional Support Group, now known as the\u00a0California Regional Support Group<\/a>. 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.<\/p>\n

The Road to a Myotonic Dystrophy Diagnosis<\/h2>\n

This desire to help stems from Barbara\u2019s own experience when her family was first diagnosed. Like many, Barbara\u2019s 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\u2019t question this diagnosis until years later, when Barbara, in her 30s, started experiencing a range of symptoms, including cataracts and muscle loss.<\/p>\n

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Coming from a family that loved spending time outdoors\u2014hiking, boating, and more\u2014this 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.<\/p>\n

Finally, after spending time on the river and being unable to get into her family\u2019s boat, Barbara realized she needed to return to her doctors for more answers. During this process, she requested her father\u2019s 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.<\/p>\n

Finding Community with MDF<\/h2>\n

Barbara recalls a turning point when she found the Myotonic Dystrophy Foundation\u2019s\u00a0Warmline<\/a>. \u201cI was overwhelmed and unsure where to turn,\u201d Barbara remembers. \u201cI saw that the foundation had a Warmline for newly diagnosed individuals, and I knew that was for me.\u201d She picked up the phone and was met with compassion. \u201cI 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.\u201d<\/p>\n

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\u201cThat phone call gave me direction, validation, and hope. It was the moment I realized I wasn\u2019t alone in this.\u201d \u2013 Barbara Ochoa<\/strong><\/em><\/p>\n<\/blockquote>\n

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\u2019s\u00a0resources<\/a>\u00a0and ensure they feel empowered to advocate for their care at the doctor\u2019s office.<\/p>\n

Paying It Forward<\/h2>\n

Join the next California Support Group on May 18th, facilitated by Barbara Ochoa and Rose Albanese!\u00a0<\/strong>They meet every other month at 1:30 PM Pacific Time.\u00a0Learn more about the California Myotonic Dystrophy Support Group!<\/a><\/p>\n

If you or someone you love was recently diagnosed with DM, you don\u2019t have to navigate it alone. Reach out to the\u00a0MDF Warmline<\/a>\u00a0or\u00a0find a local myotonic dystrophy support group near you<\/a>.<\/p>\n

Inspired by Barbara\u2019s story?<\/strong>\u00a0Explore how to become a\u00a0Support Group Facilitator<\/a>\u00a0or\u00a0make a contribution<\/a>\u00a0to make a difference in the DM community.<\/p>\n

Acknowledging our California Community Leaders<\/h2>\n

Special thanks to\u00a0Dr. Leslie Krongold<\/strong>, who helped design MDF’s first support groups and launched the Northern CA group;\u00a0Lorraine Dressler<\/strong>, who founded the Southern CA Support Group; \u00a0and\u00a0Rashid Kassir<\/strong>, who led the in-person San Diego group. Their leadership paved the way for peer support across California\u2014a legacy Barbara is proud to carry forward.<\/p>\n

About the SGF Program<\/h2>\n

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.\u00a0Explore our more than 20 regional and national support groups!<\/a><\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

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\u2019s Senior Manager of Community Engagement,\u00a0Lucie Shiffman, Barbara shares how her family\u2019s diagnostic journey inspired her to give back to the DM community. A Life in […]<\/p>\n","protected":false},"author":9,"featured_media":12169,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[70],"tags":[],"class_list":["post-12168","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/posts\/12168","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/users\/9"}],"replies":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/comments?post=12168"}],"version-history":[{"count":0,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/posts\/12168\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media\/12169"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/media?parent=12168"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/categories?post=12168"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/myotonic.org\/es\/wp-json\/wp\/v2\/tags?post=12168"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}