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!

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.

International German Speakers

Anke Klein is the Support Group Facilitator for our International German Speakers Group, also known as the Telefonische Gesprächsgruppe DM1 / DM2.

Juvenile-onset Adult (JOA) Warriors & JOA Caregivers

Ann Woodbury is the Support Group Facilitator for the JOA Caregivers Group and co-facilitates the JOA Warriors. 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 groups, 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.

Caregivers Support Group

Annette Rnjak is a new support group facilitator for the Caregiver’s Support Group, working with Ted Salwin. She is a retired Nurse living in Southern California and got involved in the DM community where her husband was diagnosed as an adult. Annette is so excited to be supporting this community, and to help create a safe place for community members to gain new information about Myotonic Dystrophy and build connections. In her free time, you can find her spending time and playing with her two dogs, Lila- a Labrador, and Abby- a Chihuahua.

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.

Southern California Regional Support Group

Barbara Ochoa first got involved with MDF about 7 years ago when she and 2 of her 3 kids were diagnosed with DM1. She is excited to be a new support group facilitator for the Southern California Regional Support Group, with Rose Albanese. Outside of her time working with MDF and supporting her children, Barbara spends her time reading and collecting books, and spending time on her family’s farm, where they have just about every animal imaginable.

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.

Florida Regional Support Group

Beth Ann Feigenblatt is a support group facilitator for the Florida Regional Support Group. Her three adult sons are her world, along with their three senior dogs. Beth was first introduced to the DM community when her husband and her three sons were diagnosed with DM1 in 2018, she feels blessed to have the DM community as their forever family! In addition to her role as an SGF, Beth is also working with MDF to be a volunteer advocate and finds her work advocating for and supporting the DM community to be deeply meaningful. When she’s at home, you can find Beth and her sons always learning new projects and skills, fixing things around the house, and working to beautify their home.

Adult Facebook Chat & Massachusetts Regional Support Group

Bill Nuttall is the Co-Facilitator for our Adult Facebook Chat & Massachusetts Regional Support Group, and moderator of MDF's DM1 Facebook Group. 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, traveling 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!

Maryland Regional Support Group

Caroline Easterling is the new Regional Maryland Support Group Facilitator. She was diagnosed with DM1 back in 2000, but before her diagnosis she was the caregiver for her father who also had DM1. She is a retired teacher, and her and her husband have two non-affected twin daughters. During her free time, she loves to travel and has been lucky enough to have travelled both domestically and internationally.

Ohio Regional Support Group & 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.

Atlanta, Georgia Regional Support Group

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!

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.

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.

Finger Lakes and Upstate New York Regional Support Group

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!

DM 1 Facebook Group Moderator

Erin Beucler is a support group facilitator for the DM1 Facebook page, she also participates in the Wednesday night chat on Facebook Messenger. Erin was diagnosed with DM1 in 2016 when she was 34. In 2006, Erin graduated with a degree in medical imaging, and now works full time at St. Vincent Medical Center as an X-Ray technician is not monitoring the Facebook page, or chatting in the DM Adult Facebook Chat, she loves spending time outside, reading, going on vacation and enjoying time with friends and family, especially her husband, Nathan.

New York City / New Jersey Regional Support Group

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.

New York City / New Jersey Regional Support Group

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.

Massachusetts Regional Support Group

Jeannine DeSoi is a Co-Support Group Facilitator of the Massachusetts MDF support group. Jeannine 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, New Hampshire, and Connecticut.

Affected Men’s Support Group

Jim Dolan is the Support Group Facilitator for the newly formed Affected Men’s Group. Raised and currently living in the Boston area, Jim also spent years in the UK, including graduate school in Edinburgh. He was diagnosed with DM1 in 2022 after almost 20 years of misdiagnosis, when his doctor introduced him to the MDF. A New England Patriots and football fan, he loves hanging out with friends, and going to the theater, movies, breweries, and interested in fitness and wellness, including learning more about DM1 modifications and nutrition. He also enjoys singing and is always one of the first people up at a karaoke night.

Virginia Regional Support Group

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.

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.

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.

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!

Mountain West

Kathie Thorsland is the new Support Group Facilitator for the Mountain West Region, which covers the 7 states of Colorado, Idaho, Montana, Nevada, New Mexico, Utah, and Wyoming. She and her husband moved 7 times in their first 14 years of marriage, but Denver, Colorado has been home for over three decades now. Kathie’s husband, Bruce, was diagnosed with DM1 at age 52 and passed away in 2010 at age 57 from DM complications following a fall. Her son, Drew, was diagnosed with DM1 in 2011 at age 19 and lives with her. They have been members of the MDF Denver/Mountain West Support Group since 2015. Kathie answered the call to serve the DM Community and follow in the footsteps of Kay Hayes, when she retired early in 2024 from her role as our Support Group Facilitator. Kathie’s son would tell you that her hobby is volunteering, but in her free time, she loves to read and watch anything Science Fiction (but not horror!).

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 Facebook Group Moderator

Kim Reynolds is one of the Facebook moderators for the DM2 online support group. She worked as a School Psychologist for 30 years, and inherited DM2 from her mother. Kim is a Grandmother to 3 grandsons born within weeks of each other in 2022. Now that she is retired, she helps with the twins every week!

Florida Regional Support Group & DM Virtual Happy Hour

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."

Finger Lakes and Upstate New York Regional Support Group

Lois Schenk is the new Co-Facilitator for the Finger Lakes and Upstate New York Regional Support Group, where Emily Jones is her fearless leader, teacher and friend. Her family has a history with DM reaching back to 1994 when all four of my children were diagnosed with DM1. A few years later Lois’s husband was diagnosed, and in 2004 their grandson was born with CDM. Much of Lois’s energy these days is spent helping her children as their condition progresses, and researching community/government services. She also does volunteer work at the New Apostolic Church and the Open Door Mission, both here in Rochester, NY. Lois and her family enjoy camping in the Adirondack Mountains and they have a large trailer that accommodates all of their family members who are still able to go (this will be Lois’s 71st year at the same campground with extended family now into the fifth generation), and Lois and her husband also greatly enjoyed some Viking cruises in Europe and the Mediterranean.

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.

North & South Carolina Support Group, DM Virtual Happy Hour, & Adult Facebook Chat

Mindy Kim is the Support Group Facilitator for North & South 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.”

Ohio Regional Support Group

Nathan Beucler is the new cofacilitator for the Ohio Support Group, with Carolyn Valek. He is the caregiver for his wife, Erin, who is affected by DM1. She was diagnosed in 2017 and they have been through everything together since and have met so many amazing people throughout the Myotonic community. Nathan wanted to be a part of change helping others, so he volunteered to moderate the “Unaffected DM1 Caregivers” Facebook Group in late 2021 and is excited to join the Ohio Support Group team. When not meeting with fellow MDF community members, he enjoys golfing, fishing, and many household projects (woodworking, mowing, gardening, etc). Nathan is always open for good conversation and looks forward to meeting more of the community in this role.

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 in 2018. Patricia's husband and son have DM1 and has found the group meetings helpful. She is a retired teacher and likes reading, doing crossword puzzles, walking with her dog, and bowling. She has been a support group facilitator for the Kansas City Support Group since 2019 and always looks forward to the bimonthly support groups! It’s been encouraging to hear other people’s thoughts and stories about living with Myotonic Dystrophy and caring for their loved ones. 

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.

Chicago Regional Support Group

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”.

Southern California Regional Support Group

Rose Albanese is a wife, mother, and teacher. She is a new support group facilitator for the Southern California Regional 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!

Affected Men’s Support Group & Chicago Regional Support Group

Ryan Vogels is a support group facilitator for the Affected Men’s Support Group and the Chicagoland DM Support Group. He got involved with MDF after being formally diagnosed in January 2023, but experienced symptoms for almost a decade before that. Ryan enjoys boating, camping, rockhounding, and other activities he can do with his family. He says that is family is what is most important to him. He has worked in the Mortgage business since 2006, and was a volunteer firefighter for 10 years as a way of serving his community. After being diagnosed, Ryan realized it might not be the safest way to help, so he stepped away from firefighting. His drive to help the community led him to becoming a Support Group Facilitator! Ryan says he likes to push back on DM as much as it pushes him.

Virginia Regional Support Group, Unaffected Caregiver’s Support Group Facebook Page

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. 

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!

Michigan Regional Support Group

Scott Virgo lives in Michigan, and is the cofacilitator for the Michigan Regional Support Group with Suzanne Perkins. He has DM2, along with his older sister, younger brother and oldest daughter. Scott worked as a social worker, in child welfare, for over 40 years before retiring, and now spends his time active in the local Kiwanis Service Club, as well as collecting and building old plastic model kits.

Affected Men’s Support Group

Shaun Moore, a DM1 Warrior, co-hosts the Affected Men's Support Group. Shaun lives with his wife, dog, cat, chickens and lots of wildlife, in a 100 year old barn they completely converted to a house on a small farmstead in the Appalachian Mountains near Asheville North Carolina. Shaun took a scenic route on his way to graduating from Purdue University with a BS in Natural Resources and Environmental Science. He has since spent 20 years in the stream and forest restoration business, the last 10 as a well-known small business owner and member of several community organization boards. You used to frequently find Shaun biking, whitewater kayaking, backpacking, fishing and hunting in the western North Carolina rivers and mountains. Now you're more likely to find him fishing or just relaxing at his ponds, watching biking and baseball on tv - and occasionally in person, watching wildlife, and making friends online. Shaun really looks forward to meeting new friends through the Men's Support Group.

New York City / New Jersey Regional Support Group

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 lifting 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.

Michigan, USA

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.

Caregiver's Support Group

Ted Salwin is the Support Group Facilitator for the Caregiver's Virtual Support Group. 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.

Board Member, DM2 Virtual Support Group

Haley Martinelli is an attorney in Cleveland, Ohio and lives with myotonic dystrophy type 2 (DM2). Haley was diagnosed with DM2 at the age of 23 and being the first in her family to be diagnosed, Haley turned to the Myotonic Dystrophy Foundation for information and support. She now facilitates a DM2 support group held virtually for folks living with DM2 to join from anywhere. Haley has spoken at various MDF events and in 2022 she joined the MDF Board.

DM2 Virtual Support Group
Board Member

Tom McPeek is a cofacilitator for the DM2 Support Group and a moderator for the DM2 Facebook Group. Unlike most regional support groups that are geographically focused, this group is for anyone diagnosed with DM2, no matter what City, State or even Country you live in. Tom was diagnosed with Myotonic Dystrophy Type 2 in 2006 and has been active with the Myotonic Dystrophy Foundation for over 10 years. He was elected to the Board in December of 2020.

Tom presented 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. Tom remains active in his local Ohio community and continues to volunteer his time with organizations that serve his community. Tom’s hobbies include dog training, hunting, fishing, and working outdoors. Tom believes the key to surviving with DM2 is to stay positive and remain as physically active as your body will allow. Read more about Tom, his family, and his work in the DM community.

Service Dog to Tom McPeek

Hank is a service dog who serves US Coast Guard Veteran, SGF and MDF Board Member Tom McPeek. Hank was provided by America’s VetDogs who trains service dogs to the specific needs of the Veteran who they will be serving. Hank was trained to support challenges and needs specific to Tom’s DM2.

Hank is trained to support Tom by retrieving any dropped items and is specifically trained to retrieve Tom’s cane and cell phone for emergencies and falls. He is also trained to carry items such as his wallet and bags that have items in them. Importantly, Hank is trained in counterbalance; he can help Tom balance himself to relieve pressure off his hips. He is also trained to push an emergency alert button. Hank has been trained to not only work by Tom’s side when walking, he is also specifically trained to help Tom while on a mobility scooter or in a wheelchair and to open doors for him while doing so. Additionally, Hank provides Tom with newfound confidence when he is alone at home and out in the community.

Please keep in mind that when you see Tom with Hank, he is working. Please ask Tom if it is ok to say hi prior to calling out Hank’s name, reaching down to pet him, or otherwise distracting Hank. Hank is generally free to socialize at the last session of every conference. If you see Hank working with Tom at an MDF conference, please give them space and allow Hank to do his job, do not approach loudly.