The first MTM-CNM Family Conference was held in Houston, TX in 2009
These two little stars, strangers until that moment yet instantly linked by their shared experience and implicit understanding of each other, perfectly represent how I feel about the people that I met this past July. I have been touched and transformed by their stories, their struggles, and their strengths. |
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“Yes,
we can!” was the theme for the 2009 MTM-CNM Family Conference held in Houston, TX
on July 24-26. Over the weekend, the
conference theme was transformed into “Yes, we did!” as one hundred and twenty-three
people representing 31 affected families attended the 3-day event that included
social networking and education. This
conference was the first 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 featured prominent researchers, including Dr. Alan Beggs, Dr. Christopher Pierson and Dr. James Dowling. Families listened to medical strategies on day-to-day care from Dr. Farber and Dr. Iannaconne, as well as from parents who participated on a parent panel discussion. Joey Wells, a 21 year-old, who is affected by MTM, gave inspiration during his Saturday night talk in which he described his journey that led to his publishing a book of poetry (www.joeywells.net). Alison Frase from the Joshua Frase Foundation was also there share about the important research supported by JFF. The fight to find a cure for MTM-CNM alive and well.
These lectures were heard around the world, as the event was webcasted. Glowpoint, Inc of Hillside, NJ donated this service along with AVI-SPL and Talkpoint. The webcast allowed families from around the world to feel connected to the MTM-CNM community at this event and provide a global platform to share information about MTM-CNM.
Stesha Heselius-Mashinchi ran a special program for the siblings of affected children. Stesha states, "The sibling conference was a phenomenal opportunity for siblings to come together and create a community of understanding and support. I am looking forward to the chance to meet and connect even more siblings in years to come.”
Outside the lecture hall important networking took place and friendships formed. The moment of two children meeting for the first time was captured on video and can be viewed at http://www.youtube.com/watch?v=pqYHMWaSKNo. The children played together and gathered for entertainment activities including arts & crafts by Project Sunshine volunteers, balloon making and a magician. A highlight of the weekend was having Rick Guidotti, Director of Positive Exposure, donate his time and incredible talent in photographing the children and adults affected by MTM-CNM. His work is truly breathtaking and his photos captured the spirit of each and every person living with MTM-CNM at the conference. His photos and work can be viewed at http://rickgnyc.exposuremanager.com/g/mtmcnm2009 Password: texas.
The conference featured prominent researchers, including Dr. Alan Beggs, Dr. Christopher Pierson and Dr. James Dowling. Families listened to medical strategies on day-to-day care from Dr. Farber and Dr. Iannaconne, as well as from parents who participated on a parent panel discussion. Joey Wells, a 21 year-old, who is affected by MTM, gave inspiration during his Saturday night talk in which he described his journey that led to his publishing a book of poetry (www.joeywells.net). Alison Frase from the Joshua Frase Foundation was also there share about the important research supported by JFF. The fight to find a cure for MTM-CNM alive and well.
These lectures were heard around the world, as the event was webcasted. Glowpoint, Inc of Hillside, NJ donated this service along with AVI-SPL and Talkpoint. The webcast allowed families from around the world to feel connected to the MTM-CNM community at this event and provide a global platform to share information about MTM-CNM.
Stesha Heselius-Mashinchi ran a special program for the siblings of affected children. Stesha states, "The sibling conference was a phenomenal opportunity for siblings to come together and create a community of understanding and support. I am looking forward to the chance to meet and connect even more siblings in years to come.”
Outside the lecture hall important networking took place and friendships formed. The moment of two children meeting for the first time was captured on video and can be viewed at http://www.youtube.com/watch?v=pqYHMWaSKNo. The children played together and gathered for entertainment activities including arts & crafts by Project Sunshine volunteers, balloon making and a magician. A highlight of the weekend was having Rick Guidotti, Director of Positive Exposure, donate his time and incredible talent in photographing the children and adults affected by MTM-CNM. His work is truly breathtaking and his photos captured the spirit of each and every person living with MTM-CNM at the conference. His photos and work can be viewed at http://rickgnyc.exposuremanager.com/g/mtmcnm2009 Password: texas.
Throughout the weekend, parents exchanged ideas, hugs and tears. A reflection room displayed photos of children 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. Parents were also treated to well-deserved massages generously donated by the Texas School of Massage. Conversations were rich and the support network grew out of this wonderful opportunity to connect with other families affected by MTM-CNM in person. Many families who were not able to attend the conference in person also contributed to the weekend by sharing their photos for the slideshow shown on Saturday night, and by sharing their stories for the creation of the MTM-CNM Family Directory.
