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!
Caregivers of Children Living with Congenital Myotonic Dystrophy
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!
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”.
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.
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.
Jeannine DeSoi is a Co-Support Group Facilitator of the Massachusetts MDF support group. Jeannine is 32 years old, and lives just outside of Boston, MA. She was diagnosed with DM1 at 27 years old, less than 6 months before her wedding. Jeannine works full time as a Registered Nurse at a major hospital in Boston, which includes working three 12-hour shifts a week! She has a two-and-a-half-year-old unaffected son who is the sunshine of her life. After the retirement of the incredible Tim Haylon, Jeannine volunteered to lead the group and is proud to share their membership now spans Massachusetts, Maine, and Connecticut.
Southern California, USA
Loraine Dressler is the Support Group Facilitator for Southern 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!
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.
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.
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.
Jodie Howell, LPN, CCRP
Jodie Howell, LPN, CCRP, Support Group Co-Facilitator for the Virginia State area and is the Clinical Research Coordinator at Virginia Commonwealth University. With 14 years of clinical research experience, she has spent three years focusing on neuromuscular disease, helping implement studies and trials for DM1 and FSHD. For the last three years, she has focused on the Myotonic Dystrophy Translational Research Program at Virginia Commonwealth University.
Jodie serves as a Virginia Medical Reserve Corps. Volunteer in the Tri-City area to support public health emergencies and co-chairs the Virginia Chapter for FSHD Society in Richmond. Jodie earned her Associate’s degree at John Tyler Community College and her LPN at ECPI University.
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 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!
New York City
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.
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!
San Diego, California, USA
Rashid Kassir became the MDF Support Group Facilitator for the San Diego area in 2022. After a member from his father's side of the family confirmed their myotonic dystrophy diagnosis, Rashid and 2 of his siblings were subsequently diagnosed. Rashid graduated from the University of California, Irvine with a Bachelor's degree in Political Science and went on to pursue a Master's in International Relations and Comparative Politics from the University of California, San Diego. Currently he owns and operates a real estate agency in San Diego area. Rashid and his wife enjoy traveling, trying new ethnic foods, and watching sunsets at the beach. He has been involved with MDF since he reached out in 2021 in pursuit of resources and support. The work done by MDF inspired Rashid to start a new support group for the DM community in San Diego.
North & South Carolina, USA & Adult Facebook Chat
Mindy Kim is MDF’s Support Group Facilitator for North & South Carolina and Supportive Facebook Chats for Adults. Mindy began dancing at 3 years old in her hometown of Redlands, California, immediately fell in love with the art form, and eventually began running her own dance company in Texas. In 2010, when she was diagnosed with myotonic dystrophy, Mindy took it upon herself to find a new way to dance with Chair Tap! Now a resident of Greensboro, NC, she facilitates a local support group and the Facebook messenger support group. Since her diagnosis, Mindy has found her “Mother Ship” in MDF’s Annual Conference and has grown into a powerful DM Warrior and advocate. The DM community has become her second family and she would not be the optimist she is today without their continued support. Taking things one step further, in 2023 she became MDF’s Registry Outreach Specialist!
International German Speakers
Anke Klein is the Support Group Facilitator for our International German Speakers Group, also known as the Telefonische Gesprächsgruppe DM1 / DM2.
Grupo de Soporte Virtual en Español de MDF
Mi nombre es David Kugler, nací y crecí en Venezuela, y tengo desde 1996 viviendo en Estados Unidos - desde el 2019 vivo en Philadelphia con mi esposa, 2 hijos y Honey nuestra Golden Retriever. Me gusta viajar, hacer parrilladas y jugar al pickleball. Mi hija tiene CDM, y fue diagnosticada a los 7 años después de más de 6 meses de exámenes y citas médicas. Conocimos MDF en el 2011, cuando asistimos a nuestra primera conferencia, y desde ese momento hemos colaborado con MDF en diversas actividades como recaudar fondos para investigación, participar en reuniones con congresistas.
David Kugler is one of the co-facilitators for the International Spanish speaking support group along with Ms. Araceli Mera. He was born and raised in Venezuela, but has lived in the United States since 1996. Since 2019, David, his wife, two children and their Golden Retriever, Honey, have been living in Philadelphia, PA. David likes to travel, barbecue and play pickleball. His daughter is living with the congenital form of myotonic dystrophy type 1 (CDM), and was diagnosed at age 7 after 6 months of examinations and doctor appointments. David's family met MDF in 2011, when they attended their first MDF Annual Conference, and have been incredible collaborators and volunteers since! The Kugler-Esparis family has support MDF through a wide variety of activities such as raising funds for research, reviewing Spanish language resources, and participating in advocacy meetings with congressmen.
Canadian Support Group
Alexandra LeBoeuf is a juvenile-onset DM1 warrior who co-facilitates the Canadian support group with her mother Julie. By sharing her story, Alexandra hopes to inspire other individuals and families living with DM to live their best life. Alexandra currently lives in Northern Ontario, Canada with her family while she completes her Bachelor of Arts in Liberal Studies at Nipissing University. With her studies, Alex aspires to become an even better advocate for the DM community.
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.
Canadian Support Group
Julie LeBoeuf lives in Astorville, a small rural town in Northern Ontario, Canada. Her husband Michel is living with adult onset DM1 and two of their three children are juvenile-onset warriors. Alongside her daughter Alexandra, Julie became an MDF Support Group Facilitator in 2022 with the hope of bringing together Canadian DM families for mutual support.
Julie has worked in the education system for the last 25 years and is presently a special education consultant for her local school district. She is a strong advocate for her children and regularly collaborates with families and professionals to support children with special needs. Julie believes every child has a gift to share with the world; her goal is to create and promote respectful and inclusive environments that allow them to shine!
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 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."
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.
Grupo de Soporte Virtual en Español de MDF
Soy Araceli Mera nacida en Santiago de Chile, de padres españoles, casada con tengo 3 hijos, soy ingeniero civil industrial y trabajo en una empresa familia dedicada a la fabricación de papel y carton corrugado. En el ano 2011 diagnosticaron a mi hijo Jose Antonio con distrofia miotonica, fue al mismo tiempo donde supe que yo también lo tenía, ha sido un largo caminar juntos como familia con esta enfermedad. El ano 2012 asistimos a la primera reunion de la fundación y fue encontrar una luz para ayudarnos a conocer y entender mas esta enfermedad.
Araceli Mera is the co-facilitator for the MDF Spanish-speaking support group alongside David Kugler. She was born in Santiago, Chile to Spanish parents, and is married with 3 children. She currently works as an industrial civil engineer in a family owned company involved with the manufacturing of paper and corrugated cardboard. In 2011, Araceli's son, Jose Antonio, was diagnosed with myotonic dystrophy, and at the same time Araceli found out that she also carried the DM gene. In 2012, Araceli, along with her family, attended the MDF Annual Conference and found hope in learning more about the disease.
Dallas, Texas, USA
Sherry Morris is a Support Group Co-Facilitator for Dallas, Texas.
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!
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.
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.
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.
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.
Samantha Welsh is a Support Group Co-Facilitator for the Virginia State area. She works as an administrator for a large educational program serving children, youth, and adults. In her spare time, Samantha enjoys gardening, exercise, and baking. Her husband Jay, who developed adult-onset DM1 in his late 30's, provides excellent quality control for all their baked goods. The couple lives in beautiful Front Royal, Virginia with their two cats, Fred and Ginger.
Susan "Glenda" Winson
New York City
Susan “Glenda” Winson is a Co-Support Group Facilitator for the New York City Area. Glenda, who has always gone by her nickname, is a retired cardiology nurse that recently discovered MDF and its resources. Glenda first received her DM2 diagnosis 26 years ago when she saw a neurologist about why she kept falling while running. Although her condition has progressed, she has always stayed active with a daily weight lifing practice, and at 74 years old she is able to stay mobile and get around the city using a lift chair and walker. While Glenda is originally from England, she has lived in NYC for the past 30 years and is excited to connect with and support her local DM community.
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.
New York City
Guillermo Zubillaga is a Co-Support Group Facilitator for the New York City Area. Guillermo lives in NYC and works for the Americas Society/Council of Americas as CIO and Senior Director of Public Policy Programs and Corporate Relations. As a Venezuelan-American, he works closely with civil society groups, media outlets, and members of the diaspora to profile the Venezuelan crisis abroad, channel humanitarian resources, and promote a peaceful resolution.