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!
Chicago, Illinois, USA
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”. Click here to email Rob.
Kansas City Region, USA
John Cooley is the Support Group Co-Facilitator for the Kansas City region along with Patricia Gibson. John, Director of Strategic Sourcing for RSM US LLP and an attorney, formed the Kansas City area group in the Spring of 2019. After John’s younger son who was diagnosed in 2016 and who is affected by DM1, John attended the last two (2) DM conferences with his family and vowed to become educated on DM and share his knowledge and provide a voice for DM patients and their caretakers in the Kansas City region. Click here to email John.
Portland, Oregon, USA
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. Click here to email Mark.
Teresa was diagnosed with DM2 and became a support group facilitator in 2022 to bring other DM families together in her home state of Arizona.
Orange County, California, USA
Loraine Dressler is the Support Group Facilitator for Orange County, California. She is 64 years old and was diagnosed with myotonic dystrophy along with her daughter and unborn grandchild. Loraine was not unfamiliar with DM since her brother had been diagnosed when he was 25 and passed away from complications at 47. No one else in her family has been diagnosed. Loraine attended her first MDF Conference 8 years ago, right after her grandson was born. She is currently the caregiver and legal guardian to her grandson with congenital myotonic dystrophy and also assists her daughter. Loraine proudly takes her grandson and his 5 pieces of his medical equipment (vest, cough assist, nebulizer, BiPap, portable oxygen concentrator, and wheelchair) everywhere, including Alaska, Arizona, and Hawaii. So far he has attended every MDF Conference with Loraine since he was born. She wants people to see them out and about to be inspired that they can do it too! Click here to email Loraine.
Washington State Region, USA
Jonathan Freedman is the Support Group Co-Facilitator for Seattle, Washington where he lives with his wife Urania. After a 30-year career as an environmental scientist he was diagnosed with DM2 in 2016. He has participated in the Seattle area group since 2017. He enjoys playing music and hopes to return to part-time teaching as COVID conditions and his health allow. He volunteers with a local advocacy group in support of safe streets for pedestrians of all abilities, including those with mobility limitations. Click here to email Johnathan.
Kansas City Region, USA
Patricia Gibson is the Support Group Co-Facilitator for the Kansas City region along with John Cooley. Her family joined the Kansas City Support group when it was first formed about 2.5 years ago. Patricia's son has DM1 and has found the group meetings helpful. It’s been encouraging to hear other people’s thoughts and stories about living with Myotonic Dystrophy and caring for their loved ones. Patricia was asked to be a co-facilitator last December. Click here to email Patricia.
Denver, Colorado, USA
Kay Hayes has been a Support Group Facilitator for Denver and the surrounding areas of Colorado since 2014. Her husband, Ron was diagnosed with DM1 at age 54 and passed away in 2018 with heart issues from DM. Her son, Doug, was diagnosed when Ron was and is now 40 and lives with her. She moved to Colorado with Ron and Doug from Cincinnati, Ohio in 2008 to be closer to family. Through their connections with the Foundation Kay started the support group as part of a large outreach effort of Leslie Krongold. Kay enjoys spending time with her four grandchildren whose mother, Marty Owen, did not inherit the DM1 gene. She also likes water aerobics, playing Mah Jong and volunteering with her church and community. Click here to email Kay.
Washington State Region, USA
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.
Atlanta, Georgia, USA
Chuck Hunt is the Support Group Facilitator for Atlanta, Georgia. Click here to email Chuck.
Rochester, New York, USA
Emily Jones is the Support Group Facilitator for Rochester, New York. Emily retired in 2006 as the Director of New Materials Research, Eastman Kodak Co. She has a son, Jason, and grandson, Logan, who are both affected by the disease. In order to learn more about the disease, Emily formed and has co-lead the Finger Lakes Myotonic Dystrophy Support Group in Rochester, NY since returning from her first MDF Conference in 2015. She spent three years working through the Greece, NY educational system to establish an IEP for her grandson prior to his entering 6th grade. Emily was a panelist on the Women's Caregiver's Panel at the 2017 MDF Annual Conference. With her son, Jason Pleau, Emily has lobbied on Capitol Hill twice for the inclusion of myotonic dystrophy in the DOD research program. In 2019, Emily became a Consumer Reviewer for the DOD Peer Reviewed Medical Research Program on Musculoskelatal Diseases from the perspective of patients with myotonic dystrophy. She spent mornings from March through June, 2020 tutoring her grandson Algebra and provided a deep dive into Romeo and Juliet. Amazingly, they both passed the 9th grade! Click here to email Emily.
San Diego, California, USA
Rashid lives in San Diego and began facilitating the support group there in 2022.
North Carolina, USA & Adult Facebook Chat
Mindy Kim is the Support Group Facilitator for North Carolina and our Supportive Facebook Chats for Adults. Mindy began dancing at 3 years old in her hometown of Redlands, California. She immediately loved the art of and has been dancing ever since. While running her successful dance company in Texas in 2010 she was diagnosed with Myotonic Dystrophy. Mindy took it upon herself to find a new way to dance, it was then she began Chair Tap. Mindy now lives in Greensboro, NC where she facilitates a local support group and the Facebook messenger support group. Since her diagnosis she has found her “Mother Ship” in MDF’s annual conference. Today she teaches “Chair One Fitness," Chair tap when she can and is a constant DM Warrior advocate. The people in this community have become her second family and she would not be the optimist she is without their continued support. Her personal goal for the DM community is to get everyone to the conference at least once to meet their extended “family.” Click here to email Mindy.
International German Speakers
Anke Klein is the Support Group Facilitator for our International German Speakers Group, also known as the Telefonische Gesprächsgruppe DM1 / DM2. Click here to email Anke.
Leslie Krongold, EdD
DM1 Over 50 & Healthier Living Discussion Group
Dr. Leslie Krongold is the Support Group Facilitator for the DM1 over 50 support group and the MDF Healthier Living Discussion Group. Diagnosed with DM1 in her mid-30s, Leslie joined an MDA support group in 1998 and was soon asked to facilitate the group. In 2012, Leslie launched the Myotonic Dystrophy Foundation's Support Group program when she served as the organization's Outreach Director. She continues to lead several MDF groups, advocate for exercise and other important health-related topics within the community, and produce the health and wellness podcast, Glass Half Full. Click here to email Leslie.
Canadian Support Group
Alex was diagnosed with DM1 when she was young and lives in Astorville, a small village in Ontario, Canada, with her family while pursuing a degree in social work so she can be an even better advocate for the DM community. She is an artist who designed the International Myotonic Dystrophy Awareness Day Logo and uses art to express herself and teach others. She became a facilitator in 2022. Learn more about Alex from her presentation at the 2021 Virtual MDF Annual Conference.
Canadian Support Group
Julie is the wife and mother to individuals living with DM1. She lives in Astorville, Canada, with her family and cares about bringing together Canadian DM families for mutual support, which is why she became a facilitator in 2022.
DM2 Virtual Support Group #2
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.
Kristen was inspired to become a facilitator in 2022 for DM families across Florida after years being a member of several MDF support groups.
DM2 Caregivers Support Group
Kim lives in Lancaster, OH, with her husband Tom who has DM2 and their two dogs. Kim loves camping and connecting with DM2 families, which is why she became a support group facilitator in 2022.
DM2 Virtual Support Group
Tom McPeek is the DM2 Virtual Support Group Facilitator and a moderator for the MDF DM2 Facebook Group. Unlike our regional support groups, these groups cater to anyone living with DM2 and their caregivers regardless of where they live. Tom was diagnosed with Myotonic Dystrophy Type 2 in 2006 and has been active with the Myotonic Dystrophy Foundation for over 10 years. Tom was one of two DM2 presenters at the Food and Drug Administration’s 2016 DM Patient-Focused Drug Development Meetings in Arlington VA and has been involved in numerous presentations and panels for the MDF Annual Conferences and other venues. He was elected to the MDF Board of Directors in December of 2020.
Although Tom is currently unable to work do to DM2, he remains active in the local community and continues to volunteer his time with local organizations that help the community. Tom’s hobbies include dog training, hunting, fishing, and working outdoors. Tom believes the key to surviving with DM2 is to stay as physically active as your body will allow. Click here to email Tom.
Dallas, Texas, USA
Sherry Morris is a Support Group Co-Facilitator for Dallas, Texas. Click here to email Sherry.
Adult Facebook Chat
Bill Nuttall is the Support Group Facilitator for our Adult Facebook Chat. Bill was born, raised, and currently lives in the Boston, Massachusetts area. Besides being a die hard Red Sox fan and animal lover, he enjoys spending time with friends and family, reading and learning about new technology, listening to music, travelling and watching reality TV. One of his lifetime goals is to visit every continent, including Antarctica. He was diagnosed with DM1 in January of 2015 and has been a co-facilitator of the Adult Facebook Chats since June of 2018. He considers the yearly MDF Annual Conference as "a life changing experience in the very best way" and has met many people who he considers his second family. Bill loves to meet new people and hopes to be able to meet you (face to face) someday soon! Click here to email Bill.
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. Click here to email Suzanne.
International German Speakers
Bernhard Rogg is Support Group Facilitator of our international Speakers Group for Germen-speaking countries, also known as Telephone Talk Group Dm1 /Dm2. Bernhard was diagnosed with DM2 in 2016. He has been organizing the international telephone discussion group since 2018. His motto was and is: I don't think about problems, I am looking for solutions. Click here to email Bernhard.
Indianapolis, Indiana, USA
Ted Salwin is the Support Group Facilitator for Indianapolis, Indiana alongside Suzette Ison. Ted's DM story began as the caregiver for his wife and son - both affected by DM1. Ted's wife had adult onset while his son had congenital myotonic dystrophy. They have both lost their battles with DM.
Ted spent many years believing that everyone with DM1 existed only under his roof, and had no clue that there was a community dealing with the same disease. He strongly believes in the community and the information MDF provides. This very week Ted shared the Cardiology Toolkit with a family, and sincerely hopes it helped them. Ted spent many years trying to understand this disease on his own, but if he can help it, no one should feel as alone as he did... ever. Click here to email Ted.
Worthington, Ohio, USA & Juvenile-onset Adult (JOA) Warriors
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. Click here to email Carolyn.
Dallas, Texas, USA
Patrick Welker is a Support Group Co-Facilitator for Dallas, Texas. Click here to email Patrick.
Mountain West Region, USA & Juvenile-onset Adult (JOA) Warriors
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. Click here to email Ann.