Myotubular Myopathy Family Conference

View 2009 video webcast

2009 MTM-CNM Family Conference

“Yes, we can!” was the theme for the 2009 MTM-CNM Family Conference held in Houston, TX on July 24-26. One hundred and twenty people representing 33 affected families attended the 3-day event that included a mix of social networking and education. Paul Frase kicked off the event on Friday, sharing his personal story and about the causes so dear to the Joshua Frase Foundation.

The conference featured prominent researches, including Dr. Alan Beggs, who is sponsored by the JFF for his amazing work unlocking the puzzle of the congenital myopathies. Other speakers included Dr. Christopher Pierson and Dr. James Dowling. Families listened to medical strategies on day to day care from Dr. Farber and Dr. Iannaconne. 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. Alison Frase helped to close the event with a moving speech sharing about the important research supported by JFF including an appeal for families to get involved.

These lectures were heard around the world, as the event was webcast. Glowpoint, Inc of Hillside, NJ donated this service. The webcast allowed families from around the world to feel connected to the MTM-CNM community at this event.

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. The children played together. Friendships formed. Parents exchanged ideas, hugs and a few tears.

Making a difference – then and now: Dr. Alan Beggs, the Scoggin Family and Alison Frase.

Alison Frase appeals to families to get involved.

John & Chrissie Sanders are honored with the “Joey Award”.

The children enjoyed the entertainment & played.

Boy bonding.

Friendships were made.

Sibling conference.

Speakers from left to right: Elizabeth Taylor DeChene, Dr. Dowling, Dr. Pierson, Dr. Farber, Dr. Beggs and moderator Dr. Foye (not shown Dr. Iannacconne & Joey Wells).

“Yes, we can!”