The second MTM-CNM Family Conference was held in Bloomington, MN in July 2011
(note: this description written by the Planning Team was originally posted at The Information Point for Centronuclear and Myotubular Myopathy)
The 2011 MTM-CNM Family Conference was held in Minneapolis, MN on July 29th-31st. Over the weekend, ninety people representing 23 families and including 15 medical professionals attended the three day event that celebrated social networking and medical education. This conference was the second MTM-CNM Family Conference of its kind to be held in the United States. Families from all over the country gathered together and united resources, ideas and connections in the hope of strengthening the MTM-CNM community. The conference started off on Friday night with a social dinner during which each family had an opportunity to introduce themselves and share a bit about their story. Families brought photo posters to display throughout the weekend to help get to know one another.
Saturday was the start of our speaking program and the conference featured prominent researchers from our community. Dr. Alan Beggs and Elizabeth Taylor DeChene of the Beggs Lab at Children's Hospital Boston were the keynote speakers on Saturday as they provided a historical prospective of MTM/CNM research and discussed current areas of focus. Elizabeth, as a genetic counselor, spoke about genetic implications and genetic testing available for our community.
Dr James Dowling of the Dowling Lab at the University of Michigan brought along a team of researchers from his lab and launched a new research study titled 'The Natural History Study of Centronuclear/Myotubular Myopathy'. This is a very important study that will acquire the most updated information on our loved ones living with MTM/CNM and report findings from over a five year period. Dr. Dowling also gave a keynote talk on Sunday discussing potential therapeutic interventions. For more information about how you can participate in the Natural History Study you can contact Dr Dowling's genetic counselor and research assistant Kim Amburgey.
(note: Dr. Dowling's lab has since moved to the Hospital for Sick Kids in Toronto)
Our other keynote address on Sunday was presented by Dr. Martin 'Casey' Childers of Wake Forest Institute for Regenerative Medicine. Dr Childers is leading the research in myotubularin gene replacement therapy in a dog model of myotubular myopathy. He shared with us very promising results from initial trials and we look forward to following progress in this area of work, as he continues forward with the support of recent MDA grants from both the US and French MDA, as well as initial support from the Joshua Frase Foundation with establishing this important dog colony. Dr. Childers' presentation was very much full of hope for our community.
(note: Dr. Childers' lab has since moved to the University of Washington)
In addition to the three keynote speakers, we were fortunate to have the Co-founder and Chairman of Cure MD, Dr. Anne Rutkowski and members of her team with us on Saturday to help members of our community learn more about and enroll in the Congenital Muscle Disease International Registry (CMDIR). This is a very important registry for our community that is a database of medical information that will track the number of people affected with MTM/CNM, document their presentation and serve as a connection between researchers and candidates for potential clinical trials/studies. The CMDIR is also partnered with the CMD BioBank to collect blood and skin samples which contain vital information to researchers. For more information about how you can participate visit the Congenital Muscle Disease International Registry website.
In addition to the medical lectures available for attendees, the conference was wonderfully balanced with social networking and family fun for all. At the same time as the lectures, there was a 'Kids Camp' with fun activities for children such as arts and crafts projects, a treasure hunt, entertainment with Newfie the Clown, balloon animal artists and children created hats for a 'Parade of Hats' during dinner Saturday night. A group for older teens and young adults, wanting to connect in a more social way throughout the weekend, was also organized and it provided them opportunities to build bonds of support. Young adults in our community wanting to connect with others are encouraged to contact Stesha Mashinchi for more information about how to stay connected with others.
The 2011 MTM-CNM Family Conference was held in Minneapolis, MN on July 29th-31st. Over the weekend, ninety people representing 23 families and including 15 medical professionals attended the three day event that celebrated social networking and medical education. This conference was the second MTM-CNM Family Conference of its kind to be held in the United States. Families from all over the country gathered together and united resources, ideas and connections in the hope of strengthening the MTM-CNM community. The conference started off on Friday night with a social dinner during which each family had an opportunity to introduce themselves and share a bit about their story. Families brought photo posters to display throughout the weekend to help get to know one another.
Saturday was the start of our speaking program and the conference featured prominent researchers from our community. Dr. Alan Beggs and Elizabeth Taylor DeChene of the Beggs Lab at Children's Hospital Boston were the keynote speakers on Saturday as they provided a historical prospective of MTM/CNM research and discussed current areas of focus. Elizabeth, as a genetic counselor, spoke about genetic implications and genetic testing available for our community.
Dr James Dowling of the Dowling Lab at the University of Michigan brought along a team of researchers from his lab and launched a new research study titled 'The Natural History Study of Centronuclear/Myotubular Myopathy'. This is a very important study that will acquire the most updated information on our loved ones living with MTM/CNM and report findings from over a five year period. Dr. Dowling also gave a keynote talk on Sunday discussing potential therapeutic interventions. For more information about how you can participate in the Natural History Study you can contact Dr Dowling's genetic counselor and research assistant Kim Amburgey.
(note: Dr. Dowling's lab has since moved to the Hospital for Sick Kids in Toronto)
Our other keynote address on Sunday was presented by Dr. Martin 'Casey' Childers of Wake Forest Institute for Regenerative Medicine. Dr Childers is leading the research in myotubularin gene replacement therapy in a dog model of myotubular myopathy. He shared with us very promising results from initial trials and we look forward to following progress in this area of work, as he continues forward with the support of recent MDA grants from both the US and French MDA, as well as initial support from the Joshua Frase Foundation with establishing this important dog colony. Dr. Childers' presentation was very much full of hope for our community.
(note: Dr. Childers' lab has since moved to the University of Washington)
In addition to the three keynote speakers, we were fortunate to have the Co-founder and Chairman of Cure MD, Dr. Anne Rutkowski and members of her team with us on Saturday to help members of our community learn more about and enroll in the Congenital Muscle Disease International Registry (CMDIR). This is a very important registry for our community that is a database of medical information that will track the number of people affected with MTM/CNM, document their presentation and serve as a connection between researchers and candidates for potential clinical trials/studies. The CMDIR is also partnered with the CMD BioBank to collect blood and skin samples which contain vital information to researchers. For more information about how you can participate visit the Congenital Muscle Disease International Registry website.
In addition to the medical lectures available for attendees, the conference was wonderfully balanced with social networking and family fun for all. At the same time as the lectures, there was a 'Kids Camp' with fun activities for children such as arts and crafts projects, a treasure hunt, entertainment with Newfie the Clown, balloon animal artists and children created hats for a 'Parade of Hats' during dinner Saturday night. A group for older teens and young adults, wanting to connect in a more social way throughout the weekend, was also organized and it provided them opportunities to build bonds of support. Young adults in our community wanting to connect with others are encouraged to contact Stesha Mashinchi for more information about how to stay connected with others.
Saturday afternoon was designed to provide a little something for everyone: a medical forum for those seeking additional medical information in a roundtable discussion, a family outing offsite and social activities onsite as well. The Mall of America across the street from the Embassy Suites provided an optimal venue for fun excursions including the family outing to the Sea Life Aquarium Saturday afternoon. Following dinner Saturday night, we hosted our community's first conference Variety Show to help showcase our community's gifts and talents. Individuals played musical instruments, sang or signed songs, told jokes, submitted videos to be played if they were not able to attend in person and moved the crowd to both tears and pure laughter. Definitely, a start of a tradition for hopefully years to come!
Additional resources that were available throughout the weekend included Kathy Lester-Ross, a representative from Philips Respironics, one of our conference corporate sponsors, who demonstrated the Cough Assist Machine and Trilogy Ventilator. Jen Mundl, an Assistive Technology Specialist from the Courage Center of Minneapolis, was available to talk with families about the use of assistive technology for play, communication and education and had a table with a variety of devices for individuals to explore. Nichole Preston from Special Focus Photography photographed the weekend and provided an opportunity for families to have family portraits taken. Alison and Paul Frase from the Joshua Frase Foundation were also at the conference and had opportunities to connect with families present and discuss ways of continuing the work of the Joshua Frase Foundation to support ongoing research in our community. We thank all of these individuals for sharing their talents, resources and areas of expertise with our community.
Additional resources that were available throughout the weekend included Kathy Lester-Ross, a representative from Philips Respironics, one of our conference corporate sponsors, who demonstrated the Cough Assist Machine and Trilogy Ventilator. Jen Mundl, an Assistive Technology Specialist from the Courage Center of Minneapolis, was available to talk with families about the use of assistive technology for play, communication and education and had a table with a variety of devices for individuals to explore. Nichole Preston from Special Focus Photography photographed the weekend and provided an opportunity for families to have family portraits taken. Alison and Paul Frase from the Joshua Frase Foundation were also at the conference and had opportunities to connect with families present and discuss ways of continuing the work of the Joshua Frase Foundation to support ongoing research in our community. We thank all of these individuals for sharing their talents, resources and areas of expertise with our community.
Throughout the weekend, families and professionals exchanged ideas, hugs and tears. On Sunday morning there was an Inspirational Service led by Jacob Berry, a young man in our community that has his own ministry. Also, a reflection room displayed photos of loved ones that have passed away from MTM-CNM and provided a space for attendees to pay tribute to the beautiful children we have lost to this disease and now serve as the inspiration behind our work for families affected by MTM-CNM. There was also a special tribute to our MTM-CNM angels with a presentation to the families who attended the conference that had a child who passed away and a community slideshow including all the angels whose families were not able to be there in person.
Many families who were not able to attend the conference in person also contributed to the weekend by sharing their photos for a community slideshow shown on Sunday afternoon and by sharing their stories for this year's edition of the MTM-CNM Family Directory. The MTM-CNM Family Directory is a collection of family stories, photos and contact information that will continue to be developed after the conference.
Many families who were not able to attend the conference in person also contributed to the weekend by sharing their photos for a community slideshow shown on Sunday afternoon and by sharing their stories for this year's edition of the MTM-CNM Family Directory. The MTM-CNM Family Directory is a collection of family stories, photos and contact information that will continue to be developed after the conference.