MYOTUBULAR MYOPATHY & CENTRONUCLEAR MYOPATHY
Family Conference Network
Meet the Conference Planning Team...
Currently, the Conference Planning Team is made up of the following:
Connie, Director 2009 event
Connie says...
"Life's experiences can either make you, or break you. I
choose, 'MAKE'!!
probably had XLMTM. We were alone with this experience, and quite
frankly, did not handle it well. Our son left us the next day, June
22, 2001. One of our deepest regrets is lack of support from other affected families.
later, he was diagnosed with XLMTM. It was a very rocky ride at first, and undoubtedly, support from affected families during those early years helped to ease this tremendously.
Email support is great- in fact, it has been a lifeline for us. Now,
imagine being face-to-face with that lifeline of support! I have
tasted this joy of meeting other families in person, and I am doing all that I can to help make this a reality for others, as well.
One way that I am doing this is by helping to plan the MTM
Family Conference. I know this will be a life-altering event!"
Connie is the mother of three children: LeeAnn (13), Elijah (who
would be 7), and Benjamin (6). Connie spends her time being a wife, mother, nurse (honorary), advocate, volunteer, and by organizing this conference for families affected by MTM/CNM. Connie lives in South Texas with her husband, Richard, and two of their children.
Sarah, Treasurer 2009 event
Sarah says...
"In 2006, I was able for the first time to meet some other affected
children and their parents, as well as some parents who had
lost their children, at the JFF event in Boston.
campaign to make a worldwide difference in Centronuclear Myopathy.
Our campaign evolved into the following objectives:
-Supporting research to discover a treatment and to forward
identifying genetic abnormalities for all forms of CNM.
-Educating families and health care professionals about CNM and
about what supports are available for them.
-Collaborating with other organizations to move forward genetic Shannon, Secretary 2009 event Shannon says: "A journey of a thousand miles begins with a single step. Our son, Javad, was born in November 2001. He wasn’t diagnosed I feel lucky that I found the online support group and met Connie, Meeting other families in person has also lifted me to new heights,
diagnosis and clinical management and support for people with
CNM, including the Joshua Frase Foundation and the Muscular
Dystrophy Association and the Myotubular Myopathy Resource
Group.
-Raising general awareness on Centronuclear Myopathy.
-Fund raising to reach the above objectives.
I am serving on the planning committee for the CNM Family
Conference 2009 because I understand how empowering families can be for each other.
I look forward to meeting you there!"
Sarah Foye is the mother of one son (7) with suspected autosomal recessive CNM. Sarah's work experience in the healthcare field, her organization skills and her gleaning of some advice from the Genetic Alliance all add to her skills to serve as secretary. Sarah and her husband, Pat, live in New Jersey with their son.
with MTM for almost two years.
who has been my rock through some really hard times with Javad.
The online group has been an incredible opportunity to meet and talk with people at a deep level.
giving me hope, sharing the joy.
I am totally looking forward to meeting others at the first MTM Family Conference".
Shannon is the mother of four children: Adam (19), Stesha (18),
Simon (15), and Javad (7). Shannon is a full-time math teacher,
part-time lacrosse coach, part-time Master's student- and loving it all! Shannon lives in Happy Valley, OR, with her husband, David, and
whichever combination of children happen to be home at the time.
Elizabeth, Advisory team 2009 event
Elizabeth says:
"It is an honor to work with such an amazing, caring, and generous
group of people!
By trade, I am a genetic counselor specializing in working with families with congenital myopathies in the Beggs laboratory at Children's Hospital Boston. Diana, Fundraising/Advisory team 2009 event Diana says... My son, Luke James Manny, was born on 12/28/07. We entered the I feel very honored to be a part of this group". Chrissie, Fundraising/Technical/Advisory team 2009 event John, Fundraising/Website/Advisory team 2009 event Betsy, Advisory team 2009 event Staceyanne, Advisory team 2009 event Amanda, Advisory team 2009 event
Personally, I have been touched by the lives of many families with
myotubular or centronuclear myopathy, and I am looking forward to
being involved in developing a conference that will allow families to
meet and learn from each other".
Elizabeth and her husband, James, live in Norwood, Massachusetts, just south of Boston.
"In my 34 years of life I have never learned more about life as I have in the past year, alone.
hospital just like any other married couple- with excitement and
anticipation. Then, along came Luke, but not in your usual fashion.
Luke spent 6 long months in two different hospitals. On 4/28/08
Luke was diagnosed with x-linked Myotubular Myopathy.
I have since dedicated my free time connecting with families whose
children have this disease. My son is my inspiration. His strength has motivated me.
Diana is the mother of three children: Mikaela (13), Taylor (2), and
Luke (6 months). Between being a wife, mother, and Luke's advocate and caregiver, Diana works for a major utility company in customer service. Diana lives in Southern California with her husband, Danin, and their three children.
Erin, Advisory team 2009 event
Debbie, Advisory teaM 2009 event
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