Alexandra is also an artist who uses her craft to express herself and as a tool to teach others. Her work recently came into the spotlight when she won the logo design contest for the International Myotonic Dystrophy Awareness Day! Learn more about Alex from her presentation at the 2021 Virtual MDF Annual Conference.
Support Group Facilitators
The Myotonic Dystrophy Foundation (MDF) is the world’s largest myotonic dystrophy (DM) patient advocacy organization, connecting people living with DM from all around the world. Community, the first pillar of the MDF mission, is founded on the determination and engagement of our incredible Support Group Facilitators, who have helped build support systems, grow relationships, and foster connection for people living with DM. Read their biographies below to get to know the selfless volunteers whose time, talent, and compassion unites our community.
Find more of our virtual support options here. Learn about upcoming support groups and events on our calendar. Aside from reaching out directly, you can also share your contact information with our support group facilitators. If you are interested in volunteering with MDF, please let us know by completing this form!
Ann Woodbury is the Support Group Facilitator for the Mountain West Region of the US, including the state of Utah, and co-facilitates the JOA Warriors, a group for individuals diagnosed as young adults whose diagnoses often affect transitions to adulthood. She is a resident of Salt Lake City and a mother of four children (now adults) who have myotonic dystrophy. Ann holds a Bachelor of Science in social and behavioral science from the University of Utah, and works with Utah State University Extension, teaching classes. In addition to leading her support group, Ann has conducted break-out sessions at the MDF Annual Conferences. As an advocate for her children, Ann has become an expert at navigating the healthcare, hospital and insurance systems and wants to offer empowerment tools to parents, teachers, healthcare providers and all those living with DM. Click here to learn more about Ann and her family's journey with DM.
Carolyn Valek is the Support Group Facilitator for Central Ohio and co-facilitates the JOA Warriors, a group for individuals diagnosed as young adults whose diagnoses often affect transitions to adulthood. She began working informally as a patient advocate in 2006 when her late husband and his two sisters were diagnosed. Her son has since been diagnosed with juvenile onset myotonic dystrophy. To learn more about navigating the healthcare system, Carolyn obtained a graduate certificate in patient advocacy and presented at the 2014 MDF Annual Conference. She has also served as a panelist at a women caregiver's session at the 2017 conference. With MDF, Carolyn has lobbied on Capitol Hill twice advocating for more funding for myotonic research. In 2018, she served as a Consumer Reviewer for the DOD Peer Reviewed Medical Research Program.
Chuck Hunt is the Support Group Facilitator for Greater Atlanta, Georgia. Chuck graduated from Texas A&M at Galveston with degrees in marine biology and marine transportation. He operated many offshore oil vessels before settling down and becoming a science teacher for 30 years. Now retired, he lives on a horse farm in Athens, GA along with his wife and daughter, who was diagnosed with myotonic dystrophy in 2007. Chuck was also confirmed to have DM1 when he & his daughter volunteered for clinical trials. Chuck has been volunteering with MDF since the organization was founded in 2007. In his free time, Chuck enjoys cycling and scuba diving, so much so that he is a certified scuba diving instructor!
In 2021, Cindy, whose family is affected by DM1, began co-facilitating the support group serving all DM families in Washington state and the surrounding regions. Click here to read Cindy's Community Interview.
Janis, who also goes by Jan, is a co-facilitator of the MDF New York City/New Jersey Support Group. Formerly literacy coach and teacher but now retired, Janis lives in Sommorset, NJ with her husband and spends her free time with her children and grandchildren. Jan has an active lifestyle and loves art, theater, as well as visiting Manhatten. After her siblings started being diagnosed with myotonic dystrophy, Jan was genetically tested and was diagnosed in 2013. As the oldest of eleven children, Jan has has five siblings pass away due to DM and is motivated to support the DM community in any way she can.
Kristen is the MDF Support Group Facilitator for the state of Florida. After noticing she had similar symptoms to family members who had recently been diagnosed with myotonic dystrophy, Kristen tested positive for DM1 in 2016. In 2020, Kristen moved to Florida with her husband and virtually attended her 2nd MDF Annual Conference, where she was inspired to volunteer to become a support facilitator. In addition to the Florida support group, Kristen also co-hosts a weekly zoom happy hour for DM warriors, who lovingly refer to Kristen as “The Recruiter.” Kristen truly has a passion for helping people and is always willing to support others, especially those living with DM in anyway she can. Her motto is, "Tough times don’t last, tough people do."
Mark Coplin is the new Support Group Facilitator for Portland, Oregon and Southwest Washington. Mark and his wife, Rebecca, provide technical support and help curate education topics and advocacy opportunities for the group. The Coplin family was recently introduced to the DM community when Mark’s oldest son was diagnosed with DM1 in 2019. After further testing identified Mark and many members of his family as positive for DM1, it became very clear to Mark and Rebecca that this was their new “Path-in-Life" and dove into everything DM. Mark’s 36-year long career as a registered architect in several states focused on Senior Retirement Communities and designing elements for mobility challenges, some of which may be suited for future challenges with DM. Mark, along with Rebecca, vow to continue to learn more about DM and to help others dealing with this disease. Mark attended his first Annual Conference in Philadelphia and quickly realized the he and his family are part of a larger family in the DM community. He is committed to helping his local support group family any way he can and looks forward to contributing to the DM community.
Rob Besecker is the Support Group Facilitator for Chicago, Illinois, also known as the Chicagoland DM Support Group. Their meetings include participating members and families from Illinois as well as parts of Indiana and Wisconsin. Rob has been a Support Group Facilitator since 2017. After years of battling cardiac and muscle related issues, he was personally diagnosed with myotonic dystrophy type 2 in 2006. Since that time, several members of his family have also been diagnosed, include his grandfather, father, brother, as well as several aunts and cousins. Professionally, Rob has worked in the healthcare industry for the last 20 years, and has a passion for helping others and living his life to the fullest. That same passion led Rob to do a hiking expedition to Mount Everest in 2015 and subsequently write his award-winning inspirational memoir that was released in 2017 entitled, “Everest Strong: Reaching New Heights with Chronic Illness”.
Sarah Berman is the Support Group Facilitator for the caregivers of children living with congenital myotonic dystrophy support group. She lives with her husband David and her daughter Zoé in Piedmont, CA. Sarah, who is living with DM1 and is raising a child with CDM, has been involved with MDF since 2008. A frequent speaker at the MDF Annual Conference, Sarah has shared tips on navigating her experience with mothers raising kids with CDM on blogs and podcasts across the web. Aside from educating others about myotonic dystrophy, Sarah has been a champion of Facebook fundraisers and is heavily involved with raising awareness through social media. In her free time, Sarah likes to paint portraits, practice Pilates, and learn American Sign Language. She also loves watching musicals and theater performances. Click here to read more about Sarah, David, and Zoé’s journey!
Suzanne Perkins is the Support Group Facilitator for Michigan, USA. She is a cognitive neuroscientist at the University of Michigan and started the Michigan support group two years after her daughter’s diagnosis with DM1. After her daughter was diagnosed at 16, she decided to use her science background to study anything she can about the disease. She found the Myotonic website and came with her two kids to their first conference in 2017. She has been involved in advocacy through Rare Disease Day at the Michigan state capital and through working with her senators to continue the funding of DM as a priority area for the Defense Department Peer-Reviewed Medical Research Program. She has also served as a peer reviewer on behalf of Myotonic.
Haley Martinelli is a supervising attorney at the Legal Aid Society of Cleveland, a non-profit law firm that provides free civil legal services to individuals with low income. Haley’s practice focuses on securing safety and security for victims of domestic violence and their children in family-related matters. A graduate of the University of Akron School of Law, Haley was the president of the Student Bar Association and an active volunteer at her community’s local domestic violence shelter.
Haley was diagnosed with Myotonic Dystrophy Type 2 in 2015 when she was 23 years old. The first in her family to be diagnosed, she turned to the Myotonic Dystrophy Foundation for information and support. Her sister has also been diagnosed with DM2 and, like most things in life, Haley and her sister navigate the disease together. Haley presented at the Myotonic Dystrophy Foundation’s 2021 annual conference and is an active member of myotonic dystrophy support groups. She is training in June 2022 to become an MDF Support Group Facilitator. In her spare time, Haley enjoys reading, spending time with her family, and going on walks outside while listening to podcasts.