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Philadelphia/Chester PA Area Support Group
Our next meeting, on August 16, 2008, will feature a presentation by National Support Group Liaison Elizabeth Ouellette. Elizabeth’s son, Yohan, has CMT and she has written many articles on issues surrounding parenting and CMT as well as innovative ways to manage pain.
In addition to her presentation, we will have the postponed “pot luck” that day so that we can enjoy some fellowship and good food. Specific details regarding the meeting will be emailed and mailed out two weeks before the date. If you have questions, please call Pat at 1-800-696-2682, ext. 103 or email her at pat@charcot-marie-tooth.org.
Las Vegas, Nevada, Support Group
The next meeting of the Las Vegas CMT Support Group will be on Saturday, July 19, 2008, from 1:00-3:00 p.m., at the West Charleston Library, 6301 West Charleston Blvd, Las Vegas, NV.
Our guest presenter at this meeting will be Al Letcher, RCP. Al is a respiratory therapist for Western Home Care, one of the fastest growing home healthcare providers in Clark County. Al will be talking in depth about Sleep Apnea and treatment options such as CPAP (continuous positive airway pressure) devices.
Anyone interested in attending is asked to contact Mary Fatzinger (702)369-6095.
Atlanta, GA, Area Support Group
On June 21st, a group of 35 attendees heard Dr. Michael Shy from the Wayne State CMT Clinic discuss the types of CMT, its characteristics and the work that the CMTA is doing to find treatments and ultimately a cure for CMT. The next meeting will be on August 23rd at 2:00 p.m.. The presenter will be Sean McKale, a leading orthotist from Wayne State who has tremendous experience in bracing CMT patients. October’s meeting will be on the 25th due to a scheduling conflict at the school.
If you plan to attend, or if you would like more information, please call Sue at 678-595-2817 or email her at cmtasg_atlanta@charcot-marie-tooth.org.
Directions from I-85: Exit Clairmont Road and travel east towards Decatur and Emory University. Cross over Briarcliff Road and the school will be on the right about 3/4 mile from Briarcliff.
Chicago, Illinois, Area Support Group
On June 21, 2008, the Chicagoland CMTA support group met in Hinsdale, Il. The guest speaker was Gene Bernardoni, an orthotics professional from the area firm, Ballert Orthopedic. Gene presented on the use of orthotics with CMT patients and brought along a variety of leg bracing examples. If you were unable to attend and would like Gene's contact information, please contact Alan Pappalardo. The next support group will be held on Saturday, September 27, 2008, at 2:00 p.m. Location is to be announced.
For more information, contact Alan Pappalardo at 1-800-606-2682, ext. 106, or at alan@charcot-marie-tooth.org.
Broomfield, Colorado, Area Group
.The last meeting was held on June 28, 2008 and featured a presentation by Linda Port from Canine Partners of the Rockies. CaPR trains dogs to provide assistance to people who have limited mobility, from individuals who use wheelchairs to those requiring a steady, four-legged partner to balance them as they walk. Leader Diane Covington also passed out the new wallet-sized card with the neurotoxic drug list provided by the CMTA.
The next meeting will be 2:00 p.m. Saturday, August 30, 2008, at Capabilities, 6805 W 88th Avenue, Westminster, CO, and will feature Dr Ronald Kramer, neurologist and recognized authority on sleep apnea.
Anyone interested may contact Diane Covington by phone at 303-635-0229 or via email at dmcovington@msn.com.
San Francisco Bay Area Support Group
The June support group meeting was cancelled due to poor air quality. The next meeting of the CMT Support Group in the San Francisco Bay/Santa Clara County area will be a picnic on September 6, 2008, from 1:30 to 5:00 p.m.
We will be talking about the upcoming patient-family conference in San Francisco on November 8th. Dr. Michael Shy from the Wayne State CMT Clinic and the genetic counselors from the clinic, as well as an orthotist from Detroit will join other presenters in making this conference a very special event.
If you are interested in attending the meeting, please contact Elizabeth by phone at (650) 559-0123 or via email at CMT_suppgroup_Calif@yahoo.com.
**New: Ann Arbor, Michigan, Area Support Group**
At Great Lakes Regional Training Center, 4800 East Huron River Drive, Ann Arbor, MI, on July 26, 2008 from 12-2:30 p.m. (Parking: Lots 3H – 3G)
Tammy Mayher is organizing a CMTA support group for those who have Charcot-Marie-Tooth disorder and their family and friends. This first meeting will provide a great opportunity to meet Tammy and other people with CMT in your area. It will also be a time to share resources, ideas and CMT related information. The scheduling of future presenters will also be discussed.
If you plan to attend or need more information about this group, please contact Tammy at: (517) 451-8471 or e-mail her at: dmayherjr@netzero.com.
Greater New York Area Group
The next meeting will be Saturday, September 13, 2008, from 12:30 to 2:30 p.m at the Horizon House (Ground Floor), Rusk Institute, New York University Medical Center, 400 East 34th Street, New York, NY.
Agenda TBD.
Anyone interested in attending is asked to contact Dr. David Younger by phone at 212-535-4314 or via email at david.younger@med.nyu.edu.
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