The Myotonic Dystrophy Foundation is the world’s largest myotonic dystrophy (DM) patient advocacy organization, connecting people living with DM in more than 78 countries around the world. What helps make this organization so meaningful is your role in it – your advocacy to advance “Care and a Cure” and your support of us and of one another. We’re thrilled that so many of you have found each other through the Foundation and are building support groups. We would like to specially thank our Support Group Facilitators for donating their time and energy to create these support opportunities.
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 as a Support Group Facilitator, please contact MDF at firstname.lastname@example.org.
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.
Teresa Buffone is the Support Group Facilitator for the Ottawa-Gatineau area of Canada. The support group was first set up in November 2013 in collaboration with Kelly Lundy. Teresa is a former program manager at Health Canada, where she delivered national compensation programs to Canadians, and a past member of the City of Ottawa Health & Social Services Advisory Committee. Currently she is a Team Member of The Neuromuscular Disease Network for Canada (NMD4C). Within the NMD4C network, she brings knowledge in myotonic dystrophy to act as a knowledge user, facilitating knowledge transfer to patients.
After a family diagnosis of DM, 11 people affected including her late husband and 2 adult children, Teresa attended numerous MDF annual conferences to gather as much knowledge as possible and raise awareness of DM and the need for an "active care management clinic" for affected patients in the Ottawa area. The Clinic opened on May 1, 2018.
Since 2012 Teresa has disseminated invaluable MDF "Anesthesia Guidelines" and "DM Consensus Care Guidelines" to Provincial/Territorial Health Ministers; lobbied local, provincial and national law makers to secure better care and services for DM patients. In 2015, she received the US MDF Advocate Award for her efforts to support Canadian families living with myotonic dystrophy. Click here to email Teresa.
Barry Cohen, PhD
Dr. Barry Cohen is the Support Group Facilitator for the state of Florida. He is a retired consulting psychologist and DM caregiver who lives in Florida. Dr. Cohen and his son, Terry, have published several books directed to the myotonic dystrophy community, including his most recent, “Living Wisely: For Millennials & Beyond”. Click here to email Barry.
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.
Worthington, Ohio, USA
Paul Dillon is the Support Group Co-Facilitator for Worthington, Ohio. Click here to email Paul.
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 daugher. 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.
Seattle, Washington, 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.
Seattle, Washington, USA
Bob is the Support Group Co-Facilitator for Seattle, Washington. He is happily married to Pati, who has a small number of repeats. Bob retired from the practice of law after 51 years this last December. Bob is a life long equestrian and he and Pati frequent a ranch outside of Sisters, Oregon. Bob was raised in Spokane and graduated from the University of Washington and NYU Law School. Bob's involvement with MDF is one way he tries to "pay it forward". Bob has two sons and three grandchildren. Click here to email Bob.
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.
Worcester, Massachusetts, USA
Tim Haylon is the Support Group Facilitator for Worcester, Massachusetts. Click here to email Tim.
Atlanta, Georgia, USA
Chuck Hunt is the Support Group Facilitator for Atlanta, Georgia. Click here to email Chuck.
Suzette Ison, RN CMCN
Indianapolis, Indiana, USA
Suzette Ison is the Support Group Facilitator for Indianapolis, Indiana. Click here to email Suzette.
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.
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 know as the Telefonische Gesprächsgruppe DM1 / DM2. Click here to email Anke.
Leslie Krongold, EdD
Northern California, USA
Dr. Leslie Krongold is the Support Group Facilitator for Northern California. 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 run a support group and produces the health and wellness podcast, Glass Half Full. Click here to email Leslie.
Portland, Oregon, USA
Clare May is the Support Group Facilitator for Portland, Oregon. In 2006 the May Family looked different than it does today. Stephanie, Wendy and Clare attended their first MDF conference in Southern California because her adult daughters were beginning to show troubling symptoms of myotonic dystrophy. Clare flew home tasked with starting a support group in the North West and never dreamed she could and would really do it! Today the Portland/South West Washington group is the largest and most active myotonic dystrophy support group in the US, with regular attendance of over 25, and often 40. Clare has enjoyed every minute leading these wonderful people who have now become a part of her family. To see the support they have provided each other not only gratified Clare as a facilitator, but also as a mom and wife who has the experience to be relatable and hopefully, helpful. In 2020, Clare cares for Wendy and her newly-retired husband 24/7, having lost Steph six years ago at age 44. Her life is busy, busy, busy but she still loves horses and friends, gardening like a crazy person, and staying up late ... but cooking? Not so much anymore! Click here to email Clare.
DM2 Virtual Support Group
Tom McPeek is the DM2 Virtual Support Group Facilitator, unlike most regional support groups, this group is for anyone diagnosed with DM2, no matter what City, State or even Country you live in. Tom was diagnosed with Myotoinic 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 Myotonic Dystrophy Foundation’s Annual Conferences and other venues.
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 is from eastern Massachusetts, just north of Boston. He was diagnosed with DM1 in January of 2015 and has been a co-facilitator of the Adult Facebook Chats since June of 2018. In his free time, Bill enjoys reading about technology, music, reality TV and spending quality time with his 3 cats. Bill loves to meet new people and hopes to meet you (face to face) 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
Carolyn Valek is the Support Group Co-Facilitator for Central Ohio. 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.
Utah & Mountain West Region, USA
Ann Woodbury is the Support Group Facilitator for the state of Utah. 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.