Exceptional Parent - August 2009 - (Page 37) was this doctor who had ordered the blood work after seeing the results of her EMG. As Julia was only five at the time, it was difficult to explain the diagnosis to her, but over time she began to ask lots of questions about her disorder, and she has since been in contact with other young girls who have CMT. My wife and I have always believed that for check-ups and garden variety sicknesses (i.e. ear infections, colds, etc) that our children come down with, we would use our local pediatrician. However, for more serious and more unusual issues we have always sought out the BEST specialists. The search is never an easy process. My wife and I did extensive research, spoke to countless physicians, and eventually found the specialists who had the most experience dealing with CMT, and, importantly, in whom we had the most confidence and trust. We now had to put a plan in place for Julia. Besides her semi-annual visits to her physiatrist (who was located at the same facility as her orthotist), we began a regular routine of appointments with her physical therapist, neurologist and orthopedist—as her foot was getting worse and we knew that surgery was an eventuality. Julia’s surgery, which was comprised of tendon transfer and heel cord lengthening, was performed in October 2008. We are pleased with the results of her treatment and believe she is now well on her way to recovery. Julia now attends physical therapy 2-3 times per week and her progress has been outstanding. Since therapy has been a part of our family’s schedule for the past several years, not a lot has changed. When she has trouble with certain tasks Julia can get frustrated, but overall she is an incredibly well-adjusted nineyear-old with a terrific sense of who she is (and a social calendar that my wife and I have trouble keeping up with!). One of our greatest allies during this process was, and continues to be, the Charcot-Marie-Tooth Association. The organization has made enormous strides in the past several years in terms of increasing the flow of information to patients, and there is real hope that scientific breakthroughs can occur in the not-too-distant future. I would encourage all CMT patients and their families to do their best to keep up with all of this information – as the support groups, medical advisory commentary, and general news are all invaluable. My wife and I both firmly believe that to solve a problem and effect change, the best approach is to move to the “front lines” of the war. Last year, I was elected to the CMTA Board of Directors, which has a primary goal of finding treatments and a cure for CMT, to create awareness and to improve the quality of life for those affected by the disorder. Two years ago, we formed ‘TeamJulia’ to swim with fellow Board Member Steve O’Donnell and participate in The Swim for the Cure, and since then we have raised in excess of $150,000. I and the other Board members are committed to generating the resources and funding necessary to support research to find a treatment, and ultimately a cure for CMT. To steal a phrase from one of my daughter’s favorite songs, I truly believe that “we’re all in this together.” And with the work currently being done, we have the wherewithal to make a difference, not just for this generation of patients, but for generations to come. • http://www.exomotion.com http://www.exomotion.com Table of Contents for the Digital Edition of Exceptional Parent - August 2009 Exceptional Parent - August 2009 Contents Ancora Imparo What's Happening Further Reading New Products 2009 Disability Awareness Night Schedule 2009 Models of Excellence in the Healthcare Profession Preterm Birth: How It Affected My Family Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children Federal Program Encourages Health Service Innovations on Developmental Disabilities Close Encounters of the Medical Kind Sitting on top of the World: One Physician's Journey to Success Raising a Noonan Syndrome Child When We Found Out Our Daughter Had CMT August is Spinal Muscular Atrophy Awareness Month! Newborn Screening Saves Babies, One Foot at a Time Another Day in the Life of the National Children's Study Evidence Based Humanity Must Be Part of the Equation Incontinence Education Series Part 7 Emergency Preparedness Series Part 4 On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions EP Bookstore Special Needs Alliance Specialcare AADMD - American Academy of Developmental Medicine and Dentistry Organizational Spotlight Living with a Disability Exceptional Parent - August 2009 Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page Cover1) Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page Cover2) Exceptional Parent - August 2009 - Exceptional Parent - August 2009 (Page 1) Exceptional Parent - August 2009 - Contents (Page 2) Exceptional Parent - August 2009 - Contents (Page 3) Exceptional Parent - August 2009 - Contents (Page 4) Exceptional Parent - August 2009 - Contents (Page 5) Exceptional Parent - August 2009 - Ancora Imparo (Page 6) Exceptional Parent - August 2009 - Ancora Imparo (Page 7) Exceptional Parent - August 2009 - Ancora Imparo (Page 8) Exceptional Parent - August 2009 - Ancora Imparo (Page 9) Exceptional Parent - August 2009 - What's Happening (Page 10) Exceptional Parent - August 2009 - What's Happening (Page 11) Exceptional Parent - August 2009 - Further Reading (Page 12) Exceptional Parent - August 2009 - Further Reading (Page 13) Exceptional Parent - August 2009 - New Products (Page 14) Exceptional Parent - August 2009 - New Products (Page 15) Exceptional Parent - August 2009 - New Products (Page 16) Exceptional Parent - August 2009 - 2009 Disability Awareness Night Schedule (Page 17) Exceptional Parent - August 2009 - 2009 Models of Excellence in the Healthcare Profession (Page 18) Exceptional Parent - August 2009 - 2009 Models of Excellence in the Healthcare Profession (Page 19) Exceptional Parent - August 2009 - Preterm Birth: How It Affected My Family (Page 20) Exceptional Parent - August 2009 - Preterm Birth: How It Affected My Family (Page 21) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 22) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 23) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 24) Exceptional Parent - August 2009 - Treatment of Neurosensory Disorders Improves Psychological Well-Being in Children (Page 25) Exceptional Parent - August 2009 - Federal Program Encourages Health Service Innovations on Developmental Disabilities (Page 26) Exceptional Parent - August 2009 - Federal Program Encourages Health Service Innovations on Developmental Disabilities (Page 27) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 28) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 29) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 30) Exceptional Parent - August 2009 - Close Encounters of the Medical Kind (Page 31) Exceptional Parent - August 2009 - Sitting on top of the World: One Physician's Journey to Success (Page 32) Exceptional Parent - August 2009 - Sitting on top of the World: One Physician's Journey to Success (Page 33) Exceptional Parent - August 2009 - Raising a Noonan Syndrome Child (Page 34) Exceptional Parent - August 2009 - Raising a Noonan Syndrome Child (Page 35) Exceptional Parent - August 2009 - When We Found Out Our Daughter Had CMT (Page 36) Exceptional Parent - August 2009 - When We Found Out Our Daughter Had CMT (Page 37) Exceptional Parent - August 2009 - August is Spinal Muscular Atrophy Awareness Month! (Page 38) Exceptional Parent - August 2009 - Newborn Screening Saves Babies, One Foot at a Time (Page 39) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 40) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 41) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 42) Exceptional Parent - August 2009 - Another Day in the Life of the National Children's Study (Page 43) Exceptional Parent - August 2009 - Evidence Based Humanity Must Be Part of the Equation (Page 44) Exceptional Parent - August 2009 - Evidence Based Humanity Must Be Part of the Equation (Page 45) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 46) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 47) Exceptional Parent - August 2009 - Incontinence Education Series Part 7 (Page 48) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 49) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 50) Exceptional Parent - August 2009 - Emergency Preparedness Series Part 4 (Page 51) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 52) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 53) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 54) Exceptional Parent - August 2009 - On the Road to Recovery - Self-Deiscovery: The Crown Jewel of Psychotherapy (Page 55) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 56) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 57) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 58) Exceptional Parent - August 2009 - Asperger Syndrome and the Difficulties of Diagnosing and Treating Related Conditions (Page 59) Exceptional Parent - August 2009 - EP Bookstore (Page 60) Exceptional Parent - August 2009 - EP Bookstore (Page 61) Exceptional Parent - August 2009 - Special Needs Alliance (Page 62) Exceptional Parent - August 2009 - Special Needs Alliance (Page 63) Exceptional Parent - August 2009 - Specialcare (Page 64) Exceptional Parent - August 2009 - Specialcare (Page 65) Exceptional Parent - August 2009 - Specialcare (Page 66) Exceptional Parent - August 2009 - Specialcare (Page 67) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 68) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 69) Exceptional Parent - August 2009 - AADMD - American Academy of Developmental Medicine and Dentistry (Page 70) Exceptional Parent - August 2009 - Organizational Spotlight (Page 71) Exceptional Parent - August 2009 - Organizational Spotlight (Page 72) Exceptional Parent - August 2009 - Organizational Spotlight (Page 73) Exceptional Parent - August 2009 - Living with a Disability (Page 74) Exceptional Parent - August 2009 - Living with a Disability (Page Cover3) Exceptional Parent - August 2009 - Living with a Disability (Page Cover4) http://www.eparentdigital.com/nxtbooks/exceptionalparent/201009 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201008 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201007 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201006 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201005 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201004 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201003 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201002 http://www.eparentdigital.com/nxtbooks/exceptionalparent/2010rg http://www.eparentdigital.com/nxtbooks/exceptionalparent/200912 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200911 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200910 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200909 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200908 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200907 http://www.eparentdigital.com/nxtbooks/exceptionalparent/200906 http://www.nxtbookMEDIA.com
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