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Save the Date: Join us April 28 - May 2 for the 2027 MDF International Conference in Seattle, Washington!

IMPORTANT: Find all anesthesia guides for individuals and their families and healthcare professionals

Support Group Facilitators

Meet Rose Albanese

California Regional Support Group & Unaffected Caregivers Group

MDF Annual Conference

View past & upcoming conferences

Rose Albanese is a wife, mother, and teacher. She is a support group facilitator for the California Regional Support Group and for the Unaffected Caregivers Support Group. Although originally from New York City, Rose has lived in Southern California for most of her life. She was an elementary school teacher and advocate for inner-city students for almost 38 years. Rose loved her job but retired a few years ago to be home for her husband, who lives with Myotonic Dystrophy Type 1. They have been married for 40 years and have two adult daughters, one of whom also has Myotonic Dystrophy. Rose likes to read mystery novels and spend time with friends. She is also Italian and loves to eat!

Meet the rest of the team

Board of Directors

Comprised of leaders in science, finance, fundraising, advocacy and non-profit leadership. Their expertise helps our work, assess our impact, and guide our pursuit of patient-relevant outcomes.

Medical & Scientific Advisory Committee

A group of leading myotonic dystrophy specialists and researchers from around the globe. Our advisors provide guidance, grant peer reviews, and speak at our annual conference.

Staff & Interns

Our staff and interns oversee the Foundation’s daily operations and work closely with the Board to guide and implement our strategic priorities.

Support Group Facilitators

Our support group facilitators are volunteers who give their time and energy to guide discussions, share resources, and foster meaningful support for individuals and families living with DM.

Former Board Members

Past leaders who have helped shape the organization’s direction and impact. Their experience and dedication continue to inform our work and strengthen our commitment to the community.

Awareness Ambassadors

Trained volunteers who share personal experiences to raise awareness and help researchers, clinicians, industry partners, and other audiences better understand what it means to live with DM.

National Advocacy Committee (NAC)

First launched in 2022, the MDF National Advocacy Committee (NAC) is a group of extraordinary community volunteers dedicated to working at the federal level in the US to increase myotonic dystrophy (DM) awareness, grow DM research funding, and advance policies to accelerate the approval of drugs to treat and eventually cure DM.