Programs and Events

Virtual Support Group for Adults Over 50 Living with DM1 Plan Future Meetings!

Published on Fri, 11/19/2021

The Virtual Support Group Meeting for Adults Over 50 Living with DM1 had its inaugural launch on Sunday, November 14th with a total of 9 attendees. For the majority of those present, it was their first support group – virtual or in-person. The age range was from 50 – 74 years old and participants zoomed in from throughout the United States (Massachusetts, Tennessee, Oregon, Florida, California, Maryland) as well as Canada.

When asked what their expectations are from the group, nearly all said to connect with others and hear how each is handling their condition with hopes of learning some new tips and tricks.

The next meeting is set for Friday, December 10th at 12 PM  Pacific / 3 PM Eastern. With hopes of meeting diverse schedules, and different time zones, the group will vary the meeting dates and times.

To attend future virtual meetings, please contact Leslie Krongold at

Click here to find other topic specific MDF Support Groups.

Click here to view the calendar of all upcoming MDF events.


UC Irvine Medical School Roadshow

Published on Fri, 03/20/2020

Educating Future Doctors

On March 3, 2020, Loraine Dressler presented to about 40 first and second year medical students at UC Irvine School of Medicine on behalf of the myotonic dystrophy (DM) community. Many of the students come from California but some come from all over the country. They are pursuing medical degrees to become physicians and they all felt very fortunate to have Loraine Dressler and families of the Myotonic Dystrophy support group speak about their experiences. The PALS program at UC Irvine hosted the talk. PALS is a student-initiated public-service program at UC Irvine modeled after the big brother/big sister program. Medical students are paired with children ages 7-17 with a chronic illness/disability in efforts to help the child or adolescent create meaningful relationships and develop coping skills.

Different Appearances Across the Generations

The student group first showed a 10 minute slide presentation that gave a very good overview of DM. Next, Amanda from the student group introduced Loraine and the Orange County Support group. Loraine brought her own family (3 generations) and two other families to represent how different and yet how similar the myotonic dystrophy experience is. Loraine spoke for 20 minutes about her story, including how her brother was diagnosed at 25 years old and died at 47 years old primarily due to esophageal cancer secondary to myotonic dystrophy. She discussed how his physician told him that since his symptoms didn't show until his was an adult, he would probably live a long life with some symptoms, which proved to be very wrong as his symptoms continued to enhance rapidly. He was on a G tube feedings and had numerous aspiration pneumonia challenges and body muscle wasting. Her family was called together when her brother was diagnosed because UCLA wanted to do genetic testing. At that time, there were only muscle biopsies, which could be inconclusive and uncomfortable. Loraine and her sister declined the invitation to do genetic testing as neither of them had symptoms.

A Diagnosis for the Family

Loraine then discussed her more recent history with the disease, starting in 2012, when her younger daughter became pregnant with their first grandchild. She was retaining fluid and the baby wasn't moving. She was sent to a geneticist, who did a family pedigree and ordered an ultrasound. Two hours after the ultrasound and 5 minutes back in the office of the geneticist, three of her family members were diagnosed. The baby was diagnosed with the most severe form of DM called congenital myotonic dystrophy, while her daughter was diagnosed with childhood onset DM, and Loraine was diagnosed with adult onset DM.

Loraine spoke about her muscle tightening experiences throughout her life, including her retirement at age 50 due to not rehabilitating after having bilateral hip replacements. She discussed how challenging it is to care for a child with congenital DM, while having it herself. She discussed all of her grandson's affected bodily systems and spoke about needing a "Team Zen" to work with a person who has a degenerative progressive condition without a cure. Loraine suggested that a social worker who is connected to the community can be the best resource for patients like her family.

Families Share their Stories

A member of the Orange County support group named Emily spoke about her diagnosis, which came after her son was born, when she was showing the neonatologist a family picture. The doctor saw her nephew in the picture and told her he knew that her son was likely born with Congenital DM. Emily had a family gathering and then they discovered that her twin sister, uncle and two nephews had DM. Emily had not been able to conceive and her baby came through IVF. She had not done any testing for DM.

Another group member, Karin, spoke about her struggles with DM including how her diagnosis came after her father-in-law told her that she was dragging her foot and should be seen by a neurologist. Karin has three children, none of whom showed any signs of DM, nor had they been tested. No one in her family had showed obvious signs of DM either.

Put People First

The medical students were encouraged to ask questions and there were thoughtful questions from the audience. The presentation was a great experience overall for everyone involved and validated the experiences of the support group representatives. Loraine’s wish is that the students will remember that every statistic they read represents a person and she hopes that this experience will help inform their schooling and training for years to come.

Learn more about the MDF Medical School Roadshow.

Rare Disease Day Report from Leslie Krongold

Published on Fri, 03/20/2020

Rare Disease Day 2020

by Leslie Krongold, Ed.D.

2019 was the first time the NorCal MDF Support Group celebrated the annual Rare Disease Day together. We met at Senator Dianne Feinstein’s office in San Francisco to meet with her staff to discuss legislative issues important to families impacted by myotonic dystrophy.

This year we wanted to do something different as well as to encourage other MDF support groups throughout our communities to participate. To kick off this effort, Leah Hellerstein, Program Director, invited Advocacy Consultant, Kevin Brennan, to join a community leaders webinar. Kevin discussed various ways patients, caregivers, and their loved ones can bring attention to the needs of rare diseases like myotonic dystrophy; from meeting with Congressional representatives or their staff, writing letters, using social media to get the word out, or attending a public event.

Organizing a Local Event

Meanwhile, I hoped to hold an event at the Oakland Zoo since the zebra and its stripes are the official symbol of rare disease. This didn’t quite work out but Leah discovered an organization that hadn’t been on our radar – CalRare. Leah worked with CalRare and NORD to organize an event at the Chabot Space & Science Center in Oakland.

On Sunday, March 1st several DM families joined a group of ~50 people in a classroom at the large interactive museum space. Here are a couple factoids I noted from the event: (1) There are approximately 7,000 known rare diseases; and (2) A rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 Americans.

At this gathering, our DM group was well-represented and I, personally, felt less than rare. I met individuals with much rarer conditions. One young man traveled from Sacramento with his mother for the event. He was diagnosed with Hereditary Spastic Paraplegia and had not met, in person, anyone with his genetic condition. His condition does not have a patient advocacy organization, no in-person or virtual support group to attend, and I bet he was amazed to see our group of nine people.

Starting Conversations

The event started with presentations by CalRare staff, a researcher at the California Institute for Regenerative Medicine, and Assemblymember, Rob Bonta, District 18. Bonta is the Co-Chair of the Rare Disease California Caucus and lives in the same island community of Alameda as I do.

After the presentations I introduced myself to Bonta and asked if he had heard about myotonic dystrophy. He hadn’t. So I introduced him to our DM families and staff and we all had an engaging conversation about the disease and the ways government can help our families.

And then we went on to enjoy the museum. I’d call it all a resounding success.

Leslie Krongold, Ed.D.

Massive Success for First Topgolf Tournament for Myotonic Dystrophy

Published on Fri, 03/20/2020

Topgolf Tournament for Myotonic Dystrophy

This spring, the Dillon family (Paul, Sara, Katelynn and Patrick) and friends spearheaded a new MDF tradition – a Topgolf fundraiser! The event took place in Columbus, Ohio on March 1, 2020 in celebration of Rare Disease Day, and included a fun-filled golf tournament, brunch, and raffle for over 150 participants. This year’s FUN-draiser had two ultimate goals: 1) to improve access to patient care, and 2) accelerate research toward a cure for myotonic dystrophy (DM). Thanks to the generous support of an incredible network of friends, family, community members, sponsors, and donors, the 2020 Topgolf Tournament for MDF raised nearly $33,000! Find all the photos from the Tournament on Facebook!

The Dillon Family

The Dillon's personal connection to MDF started when their son, Patrick, was diagnosed with DM as a result of complications with his club feet. Since then Patrick’s sister, mother, grandmother, and five other extended relatives (and counting) have been diagnosed. This is not the Dillon's first fundraising rodeo. Since Patrick’s diagnosis in May 2018, they have been active in the DM community by fundraising on Facebook, raising awareness about DM with Ohio State University, participating in clinical trials, and more.

Thankful for Overwhlming Support

Last week, the MDF team sat down with the event organizers, Paul Dillon, Allison Harrison, Heidi Bostelman and Julie Haar, to reflect on the success of the event and share lessons learned. "The overwhelming support of so many friends and family was truly amazing to see. Our family feels very fortunate to have the support of such a caring and generous community,” shared Paul.

Allison, who was also one of the event's premier sponsors, echoed Paul's thoughts, mentioning that the event, “far exceeded my expectations of what we thought we could do to raise awareness and funds for myotonic dystrophy research,” and that she was “amazed at the outpouring of support.” Following this year’s event, the next Topgolf Tournament for MDF is sure to be one for the books! There is no doubt this was just the first of what promises to become a long tradition, sure to draw a crowd of well over two hundred attendees in 2021.

Congratulations to "Slicers, not Hookers"!

MDF and the Topgolf Tournament planning team would like to congratulate the winning team, “Slicers, not Hookers” (Abbie and Rick Green, Nick and Marcy Bloom, Jay Myers, and Tracy Reimbold), and would like to thank everyone who participated for making this year such a success.

Special thanks to the event sponsors: Allison L. Harrison Law, LLC, Proforma Strategic Promotions, Acoustic Ceiling & Partition of Ohio, RBC Wealth Management, Ed & Eileen Dillon, and of course Topgolf!

Save the Date

We hope you can make it out to the range for next year's Tournament on February, 28, 2021!

Ready to Start Your Own Event?

Are you interested in hosting a fundraiser for Care and a Cure? MDF is here to help! Send us an email at for more information.

Report Out: Community Call January 2020

Published on Fri, 02/07/2020

Written by Northern California Support Group Facilitator, Leslie Krongold, EdD.

To kick off 2020, MDF held a webinar on January 29 for all DM Community & Caregiver Leaders. Over 70 community members registered for the presentation by Leah Hellerstein, Leslie Krongold, and Kevin Brennan. For those unable to attend the webinar, you can download the slides here: Kevin's Advocacy Update and Leslie's DM Family Day at the Park. 

Advocacy Update

The main objective for the webinar was to ignite enthusiasm for two events MDF hopes to capture national participation. The annual Rare Disease Day takes place on February 28th. Kevin Brennan, an advocacy consultant for MDF, presented an overview of Legislative Advocacy 101. Participation from community members for this year’s Rare Disease Day can be achieved at many different access points. For example:

  1. Meeting with your local federal legislative representative;
  2. Participation in a local event with other members of rare disease patient advocacy organizations;
  3. Gathering together as a local community to write letters, make phone calls, and use social media.
  4. Email your senator to keep DM funded in 2020!

In Northern California, MDF is joining with NORD (National Organization for Rare Disorders) and CalRare to hold a public event at the Chabot Space & Science Center in Oakland, California. Last year members from the Northern California MDF Support Group met at Senator Dianne Feinstein’s office in San Francisco to discuss the Orphan Drug Act.

Family Day at Cedar Fair Amusment Parks

The second event MDF is hoping to get nationwide participation with is the DM Family Day at the Park. In April 2019, Leslie Krongold arranged the first DM Family Day at California’s Great America amusement park. This year the event has expanded to include other amusement parks operated by Cedar Fair throughout the United States and Canada.

Currently eleven community members have stepped up to organize a DM Family Day at their local park to be held either this spring or summer:

  1. Buena Park, CA with Loraine Dressler
  2. Northern CA with Leslie Krongold
  3. Shakopee, MN with Liz Naylor
  4. Kansas City, MO with John & Susan Cooley
  5. Charlotte, NC with Mindy Kim
  6. Kings Mills, OH with Suzette Ison & Ted Salwin
  7. Sandusky, OH with Suzanne Perkins & Carolyn Valek
  8. Doswell, VA with Venessa Hudson

If you are interested in participating, please contact Leslie at You can find a Cedar Fair park near you on their official website.


MDF will help all volunteers promote these events to their local DM communities. For more information about holding a Rare Disease Day event in your community, contact MDF at or by phone at 415-800-7777.

MDF Medical School Roadshow Raises DM Awareness at Ohio State University

Published on Thu, 11/07/2019

Dr. William D. Arnold, Neurologist at the Ohio State Wexner Medical Center, kicked off an educational presentation about myotonic dystrophy to second and third year medical students on October 9 at the Ohio State University (OSU) medical school. The group included students from a special interest group in neurology.

Dr. Arnold opened the presentation by explaining how often myotonic dystrophy is under-diagnosed or misdiagnosed, even though it is the most common form of adult-onset muscular dystrophy, with over 140,000 people in the US alone living with the disease. He explained the various symptoms of the disease so that the medical students could recognize them later in their careers, regardless of what field they enter. He also shared results of myotonic dystrophy research conducted at OSU.

Next up, MDF community member Carolyn Valek shared the four-year diagnostic and medical care odyssey that her husband Karl underwent, which led her to build a patient-centered home with 10 healthcare specialists at the Ohio State Wexner Medical Center. By the time her son Scott was diagnosed, there was no problem assembling the same team of specialists. She also shared the results of a survey on DM healthcare management that she conducted as part of a graduate certificate in patent advocacy. The survey highlighted major challenges in managing DM care, including: identifying healthcare professionals who understand DM, coordinating care with a team of doctors and specialists, and helping specialists see the medical challenges in a particular body system from the point of view of a DM patient.

MDF community member Paul Dillon (the event’s organizer) shared his family’s more recent experience managing DM after the congenital form was diagnosed in his son. He also talked about all the valuable services he found through MDF. The medical students were very interested in MDF literature that he handed out including the MDF Toolkit and DM1 clinical care recommendations.

Paul’s wife Sarah and his 3-year-old son Patrick, along with Carolyn’s son Scott, also attended the Roadshow. They participated in a lively question and answer session that followed the presentation. The attendance of affected family members was very valuable to the students, because they could see how variable DM can be and how it differs across the congenital, juvenile-onset and adult-onset forms.

Volunteers needed!

We need participation from the people who know DM best: you and those in your family members living with DM. MDF will provide you with training, contact local medical schools, and supply a packet of information and tips. You'll then visit medical schools near your home to speak to second or third year students about myotonic dystrophy, including the disease mechanism, symptoms and your personal experience. You can help future doctors learn about DM in the most compelling way possible, by telling your story and providing a real-life picture of the disease in all its variability and whole-body impact. Contact MDF for more information at 415-800-7777 or via email at

MDF's First Away Camp for JOAs a Big Success!

Published on Thu, 08/15/2019

Content originally published in The Pantagraph by author Paul Sweich, Aug 10, 2019

HUDSON — Jen Williams was a stellar student until age 15. "I had trouble focusing starting in high school," said Williams, 30, of Lake Forest. "I couldn't power through like I did before. "At first, I was scared," Williams said. "I didn't know what was going on. I thought I was smart, which, technically, I am."

In addition to cognitive difficulties, Williams began to experience stiffness in her hands and daytime sleepiness. She finished high school with tutoring help. It wasn't until age 26 that she discovered the cause of her symptoms: myotonic dystrophy (DM), a form of muscular dystrophy that may not affect people until they are adolescents. DM was largely unknown until a few years ago.

Symptoms of the inherited, genetic disease — which include muscle atrophy, cognitive impairment, daytime sleepiness, heart function abnormalities, breathing difficulties and problems with speech and swallowing — affect muscles throughout the body and get worse as affected people get older. People with DM are sometimes misdiagnosed and there is currently no cure. As a result, people with DM sometimes isolate themselves, said Leah Hellerstein, program director for MDF.

But that's not what 11 adults with juvenile-onset DM, including Williams, were doing this week at Timber Pointe Outdoor Center at Lake Bloomington.

They were at MDF's Camp JOA (juvenile-onset adults), the first-ever nationwide camp for adults with DM sponsored by the San Francisco-based foundation. The 11 campers were ages 21 through 40 and represented seven states.

"This is brilliant," Williams said of the camp. "We get to do things we couldn't do before," such as ziplining and archery.

"No one judges you because you're all in the same boat," said Williams' brother and fellow camper Paul Williams, 33, of Evanston. He began to experience difficulty with balance, limited range of motion, arm and hand muscle stiffness and daytime sleepiness at a young age but was misdiagnosed with cerebral palsy. He wasn't diagnosed with DM until age 29 "It's hard having this disease but don't let it define who you are," he said.

DM affects one in 2,300 people in the United States, or about 150,000 people across the U.S, according to the foundation. Many more are affected throughout the world. People may take steps, such as medications and therapy, to manage their symptoms but there are currently no approved therapies or a cure.

While the foundation funds research, provides support for patients and families, advocates with government agencies and hosts an annual conference, it didn't have a camp until this week.

Camper Christine Bade, 38, of Washington, originally from California, was diagnosed when she was in fourth grade at the same time as her older brother. "The doctor said it's new and rare and most people with this move into the mountains and isolate themselves," Bade recalled. "Why would we isolate ourselves? Her symptoms include getting tired easily, muscle cramps, imbalance and dizziness. She is able to work in child care part-time but knows that eventually she may no longer be able to do that "We are in pain constantly," she said. "I try to stay positive."

"It (DM) is one of the hardest things you can experience," said camper Tyler Hinds, 29, of Ohio. "It never gets better. But I still like to try new things."

Bade's family has hosted foundation support group meetings but members recognized the need for a camp for adults. Muscular Dystrophy Association (MDA) has summer camps for children with muscular dystrophy until age 18. To fill the gap, the foundation decided to sponsor a camp for juvenile-onset adults with DM, Hellerstein said.

The foundation chose Timber Pointe because it hosts camps for adults as well as children, is centrally located and has hosted MDA camps, Hellerstein said. "I was thrilled," Timber Pointe Director Allen McBride said.

One focus was giving campers opportunities to socialize with other adults with juvenile-onset DM through karaoke, board games and cookie decorating, McBride said. Another was helping them to discover new hobbies such as fishing, canoeing and horseback riding. "We want to create recreational and social opportunities ... to nurture long-term relationships," Hellerstein said.

"We love this camp," Bade said. "It get us moving. Some people I know. Some I'm meeting for the first time.

Jessica Ison, 27, of Indiana, said "They have what I have. They understand what I'm going through."

"I hope we can have more (camps)," Bade said. "I've made lifelong friendships."


Click here to read the original article on

Contact the author, Paul Swiech at (309) 820-3275. Follow him on Twitter: @pg_swiech

DM Days 2019

Published on Thu, 08/15/2019

MDF created the DM Day program to bring together clinicians, researchers and myotonic dystrophy (DM) family members to provide close-to-home access to educational sessions and provide networking and friendbuilding opportunities for our community. The one-day events offer opportunities for the community to meet local regional clinical staff, hear first-hand research updates and learn current symptom management strategies from knowledgeable professionals. MDF has hosted more than a dozen DM Days since launching the program in 2017, and many more are planned in Fall 2019 and beyond. 

DM Days Reach 5 US Cities in 2019

MDF hosted four record-setting DM Days in the first half of 2019. Learn more about these events and access presentations and resources presented at prior DM Days here.

Thanks to Our Partners

MDF has hosted 2019 DM Days at Virginia Commonwealth University, Houston Methodist University, the University of Florida and the University of Kansas, thanks to outstanding partnership and support from the clinicians and care professionals at these institutions - and we are really grateful.

Coming This Fall - Yale University

Don't miss our last DM Day of 2019, which will be held at Yale University on October 12th, 2019

Register for the MDF DM Day at Yale University.

Coming Soon to City Near You?

MDF is reviewing options for 2020 DM Day locations. Watch the Dispatch for program announcements.  Find more information about DM Days here.


Contact MDF at

Start a Support Group in Your Area

Published on Thu, 08/15/2019

Over 24 Active Support Groups

MDF currently sponsors 24 active support groups around the US and internationally, in addition to our online and phone based groups. We are incredibly grateful for the commitment of our support group facilitators and the vital role that they play for the DM community. Support groups provide a space for people to connect, share stories and challenges, and support one and other. These groups create lasting relationships and can help people feel less isolated and alone.

Click here to find an in-person support group near you!

Start a MDF Support Group in Your Area

We are on a mission to make support groups available to every affected family member who wants one. If you are interested in starting a support group in your area, we are here to work with you through every step of the process, and we'll provide ongoing support and resources to ensure that your group is a success. Contact us at 415-800-7777 or at for more information. 

Virtual Support Options

Don't live near a support group but still interested in networking, sharing information and making friends in the DM community? Not quite ready to start your own? Check out MDF's Facebook Groups:

Other MDF Facebook Groups:

MDF Community Forum Update

Published on Thu, 07/18/2019

Many of our community members have joined closed MDF Facebook groups to network, share information and make friends in the DM community. MDF offers private Facebook groups for people with DM1, DM2, JOA, Caregivers, and many more!

These online forums complement MDF's support group program, which features both onsite and virtual/online meetings. These programs have replaced the community forum MDF has hosted for many years, and no one has posted in or used that older site in over a year. The community forum site costs more than $500 a year in licensing fees to publish.

Given that the site hasn’t been accessed in over a year, MDF will cancel the site when it comes up for renewal August 1. We have already downloaded photos from the community forum, and will upload and make this content available on our website in the near future. If you have other content on the community forum such as videos that you would like to keep, please log into the community forum and download this content before July 30, 5 PM PT.

Join a MDF Facebook Group:

Other Facebook groups associated with MDF:


Find other support options here! If you have any problems with the downloading process, contact MDF at 415-800-7777 or