Christmas Party
The Johnstown CMTA Support Christmas Party was held as always at The John P. Murtha Neuroscience and Pain Institute (JPMNPI). The meeting was well attended and overserved-the cookies were awesome-thanks to Jan Goodard (JPMNPI) and Ann Bootman. Jeana Sweeney, co-leader, was back and her baby, Rylee, is doing fine. Members offered advice and support for a new member applying for disability and generally enjoyed themselves.
Christmas came early when JD asked if anyone needed an electric wheelchair and Elaine Newcomer raised her hand. She asked how much and JD gave the sign of a zero. Elaine had been desperately trying to get coverage or funding for one. It was a very emotional moment for the group and it made Christmas not only for Elaine but for everyone.
The $6000 power wheelchair was donated to the Charcot-Marie-Tooth Foundation by Lena Ciabattoni whose brother, Nick Scarfo, died this August in Pittsburgh of respiratory failure related to CMT. He had asked that his barely used wheelchair and a new lift chair be given to someone in need with CMT. Lena contacted JD and support group member Ann Bootman’s husband, Charlie, drove to Pittsburgh to pick up the equipment and stored them in his basement.
The lift chair will be given to CMT Support member Joyce Miller’s 82 year-old father, Vernon Yoder. Vernon wears braces and also has serious breathing issues as a result of CMT.
Mr. Griffith’s sixteen year old daughter, Marah, died on Christmas Day 2001 in Vail, Colorado of respiratory arrest as a consequence of CMT.
Channel 8 (Fox) News opened their December 22 10:00 PM News with coverage of the presentation of a Jazzy Power Wheelchair. The local newspaper, The Johnstown Tribune Democrat, also had a color picture of Elaine, Charlie and JD, with a nice byline. 

Dr. William DeMayo, Medical Director, The John P. Murtha Neuroscience and Pain Institute will be the guest speaker at our February 18th meeting.
We want to thank The John P. Murtha Neuroscience and Pain Institute, The Conemaugh Health Systems and Jan Goodard and Barb Duryea, in particular, for their incredible help with our support group, dedication to helping CMT patients and now CMT research.



October 2005 Meeting
The Johnstown, PA support Group held its bi-monthly support meeting October 22 at The John P. Murtha Neuroscience and Pain Institute. We were honored to have Dr. Brian Ahlstrom, board certified neurologist and an expert on CMT, as our guest speaker. Dr. Ahlstrom discussed electrodiagnostic studies and CMT as well as other CMT issues. The meeting was well attended and very informative.
We meet bi-monthly. Our next meeting is December 17th, the Christmas Party, and the February meeting is the 18th with quest speaker Dr. William DeMayo, Medical Director, The John P. Murtha Neuroscience and Pain Institute.
If you live in West Central Pennsylvania please contact myself or Jan Goodard,  (814-269-5288), at The John P. Murtha Neuroscience and Pain Institute. Our meetings are fun and informative. We are also working with the CMTA and The John P. Murtha Neuroscience and Pain Institute to determine the prevalence of CMT in our area and need your help.
Also, Lena Ciabattoni, gave us a Jazzy scooter, and a lift chair (both like new) that belonged to her brother . He died from of respiratory complications involving CMT and specified that they were to go to someone with CMT.
We want to thank Dr. Ahlstrom, The John P. Murtha Neuroscience and Pain Institute, The Conemaugh Health Systems and Jan Goodard and Barb Duryea, in particular, for their incredible help with our support group, dedication to helping CMT patients and now CMT research.


July Picnic 2005
The John P. Murtha Neuroscience and Pain Institute, a member of the Conemaugh Health System, hosted a family picnic under the “big tent” behind the institute, Sunday, July 24th for CMT, ALS and Post Polio folks. The gala event featured music, food, many magicians and lots of prizes. CMT was well represented and we all had a good time. The two local TV stations, NBC and Fox, covered the event and interviewed CMTA Support Group co-leader JD Griffith. Unfortunately, the comely and articulate co-leader Jeana Sweeney wasn’t available; Jeana just had a beautiful baby girl, Rylee, on July 8th. Anyhow, in spite of this shortfall, CMT got great airtime and was pronounced correctly by the reporters on the 6:00, 10:00 and 11:00 news. Because of media coverage like this and other efforts locally our area probably has the highest CMT awareness in the country. We know 100 folks with CMT in this region and are initiating a CMT prevalence study. We think CMT is more prevalent than existing studies indicate and incidence reporting is a function of the awareness of medical professionals and the public. If anybody in the Johnstown-West Central PA area reads this and is not a member of our group we would appreciate you’re contacting the JD, The John P. Murtha Neuroscience and Pain Institute or the CMTA.

We again want to thank The John P. Murtha Neuroscience and Pain Institute, The Conemaugh Health Systems and Jan Goodard and Barb Duryea, in particular, for their incredible help with our support group, dedication to helping CMT patients and now CMT research.





April 2005 Meeting
The Johnstown, PA CMTA support group held its bi-monthly meeting April 28th at The John P. Murtha Neuroscience and Pain Institute. John Letizia from Laurel Medical discussed aids and helpful devices to make life easier for people with CMT. John is all too familiar with CMT, his uncle is Don McLaughlin, the patriarch and hero of our CMT group.
Ten years ago, Don single handedly assembled 30+ disparate members of his family in Johnstown, one Sunday afternoon, to allow Dr. Jeffery Vance and his team from Duke University to draw their blood for genetic analysis. The family's genes, and genes from six other large families, including families from Russia, Italy, Turkey and Japan, were used to determine the genetic cause of CMT2A. In the April 2004 issue of Nature Genetics, an International group led by Stephan Züchner, MD and Jeffery Vance MD announced, “Our results indicate that mitofusin 2 (MFN2) is a major gene underlying CMT type 2A, and probably one of the major genes that cause all hereditary forms of the axonal neuropathy, CMT type 2." As a result of this discovery Athena Diagnostics now offers genetic testing for CMT2A and researchers are now able to search for therapies to cure the disease. Click CMT Research CMT2A for more info.
CMT has dealt Don a cruel hand. He has been wheelchair bound for years and his muscles of breathing are so weak he is forced to use a BiPAP at night. Don, unfortunately, is presently in Conemaugh Hospital trying to wean himself from a respirator. He is one tough dude--a football star and tank commander. We wish him our best, he is in our prayers and we thank him for all he has done for CMT.
Again we want to thank The John P Murtha Neuroscience & Pain Institute.

February 2005 Meeting
The Johnstown, PA CMTA Support group held is bi-monthly meeting, Saturday, February 26th, at the John P Murtha Neuroscience and Pain Institute, a member of the Conemaugh Health System.. Cathy Kist from PAID, (The Pennsylvania Association for Individuals with Disabilities), addressed issues concerning disabilities and the workplace. PAID, http://www.paid-online.org/, is a non profit organization dedicated to addressing the employment needs of disabled individuals through unique programming, education and partnership with business and industry.
Some of the issues she covered included; 70% of individuals with disabilities are not employed, tax incentives exist for employers to hire the disabled, SSD, SSD eligibility and working, who is hiring locally and she mentioned the work force of local defense contractor, Kuchera Industries, is over 50% disabled. Cathy’s talk was interesting to all and invaluable to our nonworking members.
Jan Goodard, from John P. Murtha Neuroscience and Pain Institute, spoke of the exciting CMT research projects under development at the Institute. She also discussed the benefits of Conemaugh’s new Art for Healing, a program employing artistic creativity to benefit chronic conditions in general and CMT in particular.
JD gave a brief PowerPoint presentation on a potential new treatment for CMT1A, interference RNA (RNAi). The science behind RNAi is baffling to most and remained so following the presentation and video.
We again want to thank The John P. Murtha Neuroscience and Pain Institute, The Conemaugh Health Systems and Jan Goodard and Barb Duryea, in particular, for their incredible help with our support group, dedication to helping CMT patients and now CMT research.

November, 2004
The November CMTA Support meeting was held as usual at the John P. Murtha Neuroscience and Pain Institute. Attendance was not what it was in September but the "Gentle Yoga" program presented by instructor, Judith Sullivan, Certified Yoga Teacher (CYT) was unbelievable.  I think the preconceived notion of bizarre extremity bending and a fear permanent pretzeling may have kept folks away. The program, which took most of the meeting, was not what anyone expected from a yoga program. Yoga come in many forms, has been around for thousands of years and is practiced by millions and I we got a glimpse of why. All problems seemed to disappear as the focus was on relaxation and breathing techniques-WOW. At one point Judith had all of us so relaxed we were in a trance like state and she rang a bell to bring us back. No mention was made to the typical pretzel positions and she did most of the exercises from her chair.
Interestingly, Judith devoted a considerable amount of time to breathing technique. She had us visualize our diaphragm moving in response to abdominal muscle expansion. It would seem that “Gentle yoga” is ideal for CMT patients, particularly those of us with breathing problems.  The program was developed with Conemaugh Health Systems, The John P. Murtha Neuroscience and Pain Institute for their very successful post-polio program.  Judith is very sensitive to the needs and problems individuals with CMT
Judith is offering a program through Conemaugh in Jan. that will be well worth taking. Contact Jan Goodard at 814-269-5488 or jgoodard@conemaugh.org
JD gave a quick review of the CMT presentation for organizations and groups. Jeana and I will come and present to any group, please contact us. The remainder of the time was spent discussing CMT and exposing our feet.

September 2004
The September Johnstown CMTA support group meeting was held at The John P. Murtha Neuroscience and Pain Institute in conjunction with “September is CMT Awareness Month.”  Attendance was fantastic, over 30 attendees (lots of new members) and the meeting was great.  We now have over 80 members in our group.
Two TV stations covered the event, the NBC affiliate, WJAC-TV and the Fox affiliate, WWCP-TV. The coverage included the film of the meeting and interviews with the comely, Jeana Sweeney, the support group co-leader, and aired on the 6:00 and 11:00 news.
The primary speaker was Dr. Nassr, Chief of Neurology, The John P. Murtha Neuroscience and Pain Institute, who gave excellent presentation and did a great job of answering our questions.
The meeting also included a preview of the “Conemaugh Connection with Amy Bradley,” a half-hour TV special by The Conemaugh Health System, featuring CMT. The show aired in prime time, 7:30 P.M., and four other times on the NBC affiliate, WJAC-TV. The program also airs on the public access channel periodically. This is an excellent and moving piece and has really helped raise CMT awareness in our area. We really want to thank The John P. Murtha Neuroscience and Pain Institute (in particular Barb Duryea and Jan Goodard), the Conemaugh Health System and Amy Bradley for this program, all the work they do, and their excellent CMT clinic.
This disease is not rare and it is amazing how raising awareness brings people with CMT or think they have CMT foreword.  We put a lot of effort into raising awareness here and it seems at every CMT event or presentation someone has or knows someone who has CMT. Anecdotally, Jeana’s husband is a mail carrier and has identified two families with CMT on his route.  
JD and Jeana also give CMT awareness PowerPoint presentations to civic, church, service or any group with a screen or wall and we travel.
JD Griffith and Jeana Sweeney, support group co-leaders.



















2005 Support Commentary
2006 Support Commentary.
December 2006 meeting
The Johnstown, PA CMTA support group held its annual Christmas party Saturday afternoon, December 16.  The event was well attended with lots of festive high calorie fare and great conversations.  The highlight was the arrival of Jeana Sweeney, co-leader, with her two beautiful young daughters, Halley and Rylee.. We had some new members from Hanover PA, a 3 hour drive.

October 2006 meeting

The Johnstown, PA CMTA support group held its bi-monthly meeting Saturday, October 28th at The John P. Murtha Neuroscience and Pain Institute. The guest speakers discussed various aids including walkers, wheelchairs and scooters and how to pay for them.
The group also talked about the exciting CMT awareness ads, with Joe Paterno, that the CMTA is sponsoring. CMT, thanks to these ads and other efforts, in our area, is no longer an unheard of disease. 
Jan Goodard covered the progress of The John P. Murtha Neuroscience and Pain Institute’s CMT prevalence study.  We discussed how difficult it is to motivate CMTers to participate in the survey.

June 2006 meeting
JD Griffith and Jan Goodard,, research nurse at The John P. Murtha Neuroscience and Pain Institute, reviewed the excellent and informative CMT Patient Family Conference for the members. The Conference held May 24th at the Hershey Medical Center was sponsored by the CMTA-thank you for a great show. Jan covered the morning speakers and JD the afternoon.


April 2006 Meeting
Fragrant April support meeting

Janet Goodard, RN, BC BSN CCAP, our resident CMT godsend at The John P. Murtha Neuroscience and Pain Institute, presented a program on Aromatherapy. Besides being a nurse at the CMT Clinic, Jan is also a certified Clinical Aromatherapist. Aromatherapy is a term coined by French chemist René Maurice Gattefossé in the 1920's to describe the practice of using essential oils taken from plants, flowers, roots, seeds, etc., in healing. The term is a bit misleading, since the aromas of oils, whether natural or synthetic, are generally not themselves therapeutic. In most cases, the oil is rubbed onto the skin or ingested in a tea or other liquid. Jan, with the help of her daughter, discussed the healing powers of essential oils, and demonstrated how to use this natural therapy to help to relax, sleep better and reduce muscle, arthritic, and other types of pain.  We were able to sample a large variety of blends and fragrances. The group was fragrant (we got to rub the essential oils on the back of our hands), very attentive and took lots of notes

February 2006 Meeting
The Johnstown CMTA Support group held its bi-monthly meeting February 24th at The John P. Murtha Neuroscience and Pain Institute. The quest speaker was AJ Stick, PTA, from The John P. Murtha Neuroscience and Pain Institute.  AJ discussed "Exercise: The Art of Adaptation," he also addressed the subject of the importance of research. AJ and research nurse, Jan Goodard, reviewed the research projects at The John P. Murtha Neuroscience and Pain Institute. One new member came 130 miles to attend which set a new distance record.
I visited Don McLaughlin, the patriarch of our CMT group in Johnstown, he is still on a respirator because of CMT but is in great spirits and looked great. Don single handedly assembled 30+ disparate members of his family in Johnstown, one Sunday afternoon, to allow Dr. Jeffery Vance and his team from Duke University to draw their blood for genetic analysis. The family's genes, and genes from six other large families, including families from Russia, Italy, Turkey and Japan, were used to determine the genetic cause of CMT2A.

Again we want to thank The John P. Murtha Neuroscience and Pain Institute for their incredible help and now CMT research