Programs and Events

In Memory of Shannon Lord, MDF Founding Chairman

Published on Wed, 06/05/2013

It is with great sadness and heavy hearts that the MDF mourns the passing of our founding chairman, Shannon Lord, who passed away on June 4, 2013. Shannon is survived by her husband, Larry Lord and her two adult sons, Hunter and Ashby.

Shannon will be forever missed by those of us privileged to know her and call her our friend. Shannon was an artist, writer, gardener, volunteer and myotonic dystrophy advocate for over twenty years, and was the architect behind the creation of our foundation. Her accomplishments in and for our community are legendary. After years of searching by Shannon and her husband for a diagnosis to explain the difficulties faced by her oldest son Hunter, Shannon learned in 1989 that he had myotonic dystrophy. Following Hunter's diagnosis, Shannon and her younger son Ashby were also diagnosed.

Shannon began her journey into myotonic dystrophy advocacy by educating her extended family about the disease, which led to her to form the Hunter Fund (a family-supported charity) to support DM research. In 2001, she was invited to attend the International Myotonic Dystrophy Consortium meeting in Kyoto, Japan (IDMC-3), where she spoke to researchers about the patient perspective. Following that meeting, she became a tireless advocate for myotonic dystrophy support and research. She was invited to address the patient perspective again at the next IDMC meeting in Glasgow, Scotland in 2003 (IDMC-4), where she was a catalyst in promoting research into the effects of DM on the brain. After that meeting she wrote a chapter on the DM patient's perspective for Peter Harper's seminal book on myotonic dystrophy, The Facts.

At the (IDMC-5) meeting in Quebec, Canada in 2005, Shannon convened a meeting of American family members, and it was out of that meeting that MDF evolved. We were honored to have her serve as our Founding Chairman and moral compass from May of 2006 to March of 2009. In addition to speaking at IDMC, NIH and other meetings, Shannon raised hundreds of thousands of dollars for myotonic dystrophy research and patient support. After leaving the chairmanship of the MDF, she remained a tireless advocate for the myotonic dystrophy community and DM research, and served on the Muscular Dystrophy Coordinating Committee at the National Institutes of Health, where she raised the profile of myotonic dystrophy in the rare disease community.

Even in passing, Shannon continued her generosity of spirit, requesting that gifts in memory be sent to the MDF to support future IDMC conferences.

Her passing is a very sad time for our community and she will be forever missed. Our condolences and prayers go out to her husband Larry, her sons Hunter and Ashby and her extended family.

Jeremy Kelly

John Brekka
Vice Chair

To read a letter written by Shannon Lord to the DM community documenting her journey from diagnosis to empowerment, click here.


MDF 2012 Annual Conference A Big Success

Published on Wed, 08/29/2012

It's a wrap! A sold-out gathering of over 300 DM families, researchers, medical professionals and vendors from the U.S, Canada and countries as far-flung as Chile came together at the 2012 MDF Annual Conference to learn current strategies for living with DM, gain new information on myotonic dystrophy symptoms, and hear a report on current research advances.

The conference was again a wonderful way for the MDF community to enjoy the camaraderie that the annual conference program promotes. Returning family members reunited with other families that share the DM journey, and met new community members eager to get involved and learn about myotonic dystrophy.

More than a dozen clinical and research professionals presented on topics ranging from DM and the Heart and Family Planning & Genetic Counseling to Occupational Therapy for DM: Strategies for Living and Social Security: Be a Consumer, Not a Victim. A number of conference topics were presented for the first time, and this year's MDF Resource Fair was significantly expanded, to include a broad range of vendors from leading DM research institutions collecting blood samples and data for research studies to vendors demonstrating the latest in orthotic and respiratory assistive devices. It all took place over a sunny, blue-sky weekend at the Hyatt Regency, San Francisco Airport on August 17th and 18th, 2012.

In addition to presentations and Q&A sessions with leading medical providers, this year's conference included a first-ever research update from the pharmaceutical industry, with a presentation from Dr. Robert MacLeod, Vice President of Oncology and Exploratory Discovery at Isis Pharmaceuticals. After an introduction from Dr. John Day of Stanford University that emphasized the importance of continuing to pursue multiple treatment options, Dr. MacLeod discussed current developments in Isis’ research and the company's recent partnership with Biogen Idec.

MDF Board and staff members presented information on new and expanded MDF programs and how MDF community members can get involved, including the Foundation's new initiative, TeamMDF, a grassroots volunteer and advocacy corps that is designed to enhance the support MDF offers to people and families living with DM, generate new tools and resources for the MDF community and create an organized face and voice for myotonic dystrophy at the state and national levels. 

Sunday featured do-it-yourself community meetings and a popular and well-attended chair yoga demonstration. A number of families also took advantage of the lovely Bay area weather to explore San Francisco.

The entire program, including copies of presentations from many of the speakers, can be found by clicking here.

Be sure to mark your calendars for next year's conference! The 2013 MDF Annual Conference will be held November 8th and 9th, 2013 in Houston, Texas. We look forward to seeing you there.


Please contact MDF at or call 415-800-7777.


Margaret Bowler Carries the Olympic Torch for Myotonic Dystrophy

Published on Thu, 05/17/2012

When the Olympic Torch blazes across the UK on its way to the London 2012 Olympics, Margaret Bowler, founder and National Coordinator of the Myotonic Dystrophy Support Group (MDSG), will be one of the 8,000 inspirational individuals honored with escorting the flame along its route. Bearing the Olympic Torch is a great tribute for Margaret, whose own journey through life has been devoted to shining light on the needs of people living with myotonic dystrophy.

A nurse and midwife for 40 years, Margaret directed her energies to the cause of myotonic dystrophy in 1989 when her youngest son and husband were diagnosed with the disease. Frustrated by the lack of scientific research and inadequate knowledge in the medical services, Margaret has spent the last quarter century building the Myotonic Dystrophy Support Group, based in the UK, to help all the families affected by this rare genetic condition.

In response to a nationwide search last summer by the Olympic sponsors for people that had made a “real difference in their communities”, to participate in the Olympic Torch Relay, myotonic dystrophy researcher Dr. Helen Brownlee secretly submitted her name for the honor. The nominating letter cites Margaret’s special qualities that “made the impossible, possible” and reads in part: 

“As National Coordinator of the Myotonic Dystrophy Support Group, she has achieved so much: commissioned the first lay book for families on myotonic dystrophy; sent 187 reassembled wheelchairs to school children with the disease in Bulgaria; raised the awareness of myotonic dystrophy through speaking at national and international conferences and participating in workshops; raised funds to support research on myotonic dystrophy, and most importantly has given families hope by bringing them together with scientists, researchers, clinicians, doctors and other families with myotonic dystrophy.”

To everyone’s delight, word came in early December that Margaret had been chosen from over 60,000 nominees to carry the flame on June 28 in Radcliffe-on-Trent, about 10 miles from where she lives in Nottingham. Dressed in a specially-designed white track suit with gold trimmings, Margaret will carry the flaming, 32-inch torch for approximately two tenths of a mile, while friends, family, church members, and supporters from the MDSG network cheer her along the route.

Says Margaret of the honor, “The amazing thing is that myotonic dystrophy will be publicized, along with my name, and awareness of the condition will be helped tremendously, for sure.” Already she has been interviewed on local radio shows, and stories have appeared in several regional newspapers as well. MDSG is gearing up to take advantage of this fantastic opportunity by printing green and white T-shirts for local supporters to wear in hope that TV cameras will glimpse them in the crowd. Margaret and everyone in the Myotonic Dystrophy community is extremely proud of this great honor and we all wish her the very best for this special day.