Upcoming Events:

2008

• April 14-17, 2008: Annual Meeting of the AAN
• May 29, 2008: CMTA Patient-Family Conference, Johnstown, PA

Previous Events:

2005

• February 22, 2005: CMT Research Fundraiser at The Breakers
• April 9, 2005: Annual Meeting of the AAN
• May 19, 2005: CMT North American Consortium
• June 12, 2005: O’Donnell’s Swim for Cure Raises over $46,000 for Research
• July 18, 2005: AFA Golf Tournament
• July 22,2005: Johnstown Golf Tournament
• October 22, 2005: AAN Neurolgy EXPO

2006

• April 1-8, 2006: AAN 58th Annual Meeting
• May 24, 2006: Pennsylvania Patient-Family Conference
• June 11, 2006: 2006 Swim for the Cure
• June 27, 2006: Wayne State University Charity Golf Tournament

2007

• February 19-21, 2007: Third Annual Update Symposium Series on Clinical Neurology and Neurophysiology
• June 09, 2007: Pittsburgh Patient-Family Conference
• June 10, 2007: 6th Annual "Swim for the Cure"
• July 18-20, 2007: Second International CMT Consortium

2008

• March 15, 2008: Ethan’s Walk for the Cure, Mount Aloysius College, Cresson, PA
• April 5, 2008: CMTA Patient-Family Conference, Philadelphia, PA
• April 11-12, 2008: CMT Patient Fair, Detroit, MI

On February 22, 2005, current Board member, J. Rodman Steele, hosted a dinner at The Breakers in Palm Beach, Florida, to raise money for the CMTA’s research fund.

Before dinner, over one hundred people attended presentations by Dr. Michael Shy, Wayne State University, and Dr. Stephen Scherer, University of Pennsylvania, who explained from a scientific point of view, why ascorbic acid is currently the most promising area of research for CMT Type IA patients.

Equally compelling was the presentation by sixteen-year-old Archit Kanuja, who put a human and youthful face on the problems of CMT and emotionally touched the whole audience when she described what it would mean to her if a cure were found for CMT.

Diseases like CMT that are out of the public mainstream and do not provide income for drug companies have difficulty getting funding for treatments and research, and the money raised at this event will significantly contribute toward the $30,000 committed by the CMTA to help fund the first clinical trials of ascorbic acid in North America.

We still have a long way to go, however. The clinical trials, which will involve over 500 patients over four years, will cost an estimated $5,000,000.

The CMTA staffed a booth at the convention to answer doctors’ questions about CMT and to provide printed material for doctors’ offices. In addition, the CMTA hosted a meeting of its Medical Advisory Board to discuss the research grants, the revision of the physician’s handbook and the upcoming Consortium.

Seventy-five leading CMT researchers presented their latest research findings and worked on collaborations for future CMT research. This was the the second Consortium in North America hosted by the CMTA.

The Consortium was not open to the general public, but you can click here to read selected abstracts of the research presented.

CMTA Board member Steve O’Donnell has swum the Chesapeake Bay Challenge each of the past three years. This year, Steve and his children, Jaime and Sean, competed in a one-mile swim on the Chesapeake and raised $46,983 for CMT research.

You can read more about the efforts of Steve’s family and other volunteers in the July-August 2005 CMTA Report.

CMTA Board member, Robert Kleinman, organized and hosted this annual event to raise money for CMT research.

CMTA Board President, Patrick Torchia, hosted this annual event to raise money for the work of the CMTA.

The Charcot-Marie-Tooth Association staffed a booth at the first Neurology EXPO, sponsored by the American Academy of Neurology on Saturday, October 22, 2005 from 10:00 a.m. to 4:00 p.m. at Atlanta’s Georgia World Congress Center.

We were pleased to join the American Academy of Neurology at this event, which drew attention to neurological disorders and demonstrated how people can live fuller lives through proper treatment and care.

This was the first year for the Neurology Expo, and it probably did not draw as many participants as the American Academy of Neurology might have hoped. However, the CMTA booth was visited by twelve patients and their families, and numerous other attendees expressed interest and took the brochures, newsletters and other literature we provided to spread awareness of CMT.

While the numbers may seem small, being at the EXPO gave the CMTA staff the unparalleled advantage of speaking face-to-face with concerned parents, grandparents and teenaged patients. We discussed approaches to dealing with pain, conservative management, and exercise, and virtually everyone had questions about bracing, including one couple who had traveled from Australia to inquire about alternatives in bracing which are unknown in their home country.

In the afternoon, we briefly attended a presentation by Susan Wheeler, Executive Director of the Hereditary Neuropathy Foundation, but it was our interaction with people with CMT that made the EXPO a successful and rewarding experience. We hope many more of you will join us at future events.

The CMTA was an exhibitor at the 58th Annual Meeting of the American Academy of Neurology. The meeting brought together more than 10,000 neurology professionals at the world’s largest gathering of neurologists to share groundbreaking research and to participate in a comprehensive curriculum-based educational program.

Made possible by a $250,000 grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders was held on Wednesday, May 24, 2006, at the fitness center of the Milton Hershey Medical Center, Hershey, PA.

On June 11, 2006, Steve O’Donnell and his children, Sean and Jaime, made the 5th Annual "Swim for the Cure" to help fund research and find a cure for Charcot-Marie-Tooth disease (CMT), a hereditary neuromuscular disorder that slowly cripples 1 in 2,500 people.

Steve, who has CMT, is a member of the Board of Directors of the Charcot-Marie-Tooth Association, the national organization for CMT. Since 1983, the CMTA has been generating the resources to find a cure, creating awareness and improving the quality if life for those affected by Charcot-Marie-Tooth.

This year, our effort to create awareness of CMT took off when Penn State Football Coach Joe Paterno, NCAA Coach of the Year and recent inductee in the College Football Hall of Fame, became the spokesman for the CMTA’s Pennsylvania State-wide Awareness Campaign. Coach Paterno volunteered his services for TV, radio and print ads discussing CMT and encouraging Pennsylvanians to participate in a research study conducted by the John P. Murtha Neuroscience and Pain Institute. (Select a format to view a Paterno TV spot: Windows Media Player or QuickTime Player).

Our vision is a world without CMT, and we have recently embarked on an aggressive research strategy to fund serious projects submitted by the world’s leading scientists.

Each of these projects, when approved by our Medical Advisory Board, requires the CMTA to commit $300,000 over a 3-year period, and the CMTA also funds post-doctorate fellowships of $35,000 each to encourage scientists to study CMT.

In 2005, 14 research grants were reviewed and 2 received funding commitments in the amount of $600,000 over 3 years. This year, the CMTA received 15 research grant requests and 1 post doctorate fellowship application.

The CMTA depends entirely on donations from individuals to fund these grant requests, and supporters of the O’Donnell family’s swims have already made a major contribution to the research effort.

Last year alone, the "Swim for the Cure" raised over $46,000. This year, the total was over $98,000!

Your donations will go a long way to continue our research efforts. Steve O’Donnell and the entire CMTA thank you for giving generously.

The 5th Annual Wayne State University Charcot-Marie-Tooth Charity Golf Tournament was held on Tuesday, June 27, 2006, at the Bay Pointe Golf Club in West Bloomfield, Michigan.

Proceeds of the tournament will benefit the CMT Clinic at Wayne State University.

One of the main topics to be dealt with in a number of lectures is treatment of neuropathic pain which is usually caused by peripheral neuropathy.

For information, contact:

ISAS International Seminars
PO Box 574
Jerusalem 91004, Israel
Tel: ++972-2-652-0574
Fax: ++972-2-6520558
conventions@isas.co.il
http://www.neurophysiology-symposium.com

Made possible by a $250,000 grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders was held on Saturday, June 9, 2007, at the Holiday Inn, 2750 Mosside Blvd., Monroeville, PA.

Morning presentations were made by Dr. Chitharajan Rao (Neurologist, UPMC), Sandy Thompson (MDA Health Services Coordinator, Pittsburgh Office), and Dr. Mary Louise Russell (Physiatrist, CHP).

The afternoon program continued with presentations by Scott Ospiak (Athena Diagnostics), Kathi Brandfass (Physical Therapist, Center for Rehab Services), and Dr. William DeMayo (Physiatrist, CMT Clinic, Johnstown).

Once again, Steve O’Donnell has swum the Chesapeake Bay Challenge to raise money to find a cure for Charcot-Marie-Tooth disease, a hereditary neuromuscular disorder that slowly cripples those affected. Last year’s "Swim for the Cure" raised just under $100,000. Together with his friends and family, Steve and "Team Julia" from New Jersey have joined together to make the 2007 Swim for the Cure the most successful ever. They have already raised over $141,000!

We admire Steve’s courage and determination in meeting the challenges he faces because of his CMT, and we are doing everything we can to find an effective therapy or cure. That includes making sure that every penny of every dollar you donate is actually used to fund promising research.

Although the swim took place on June 10, 2007, you can still make a donation in support of Steve and the 2007 swim team. Please click here to donate online now or click here to download and print a form you can mail with your check.

Through your generous support of Steve, Team Julia ’07, and all those who "swim for the cure," you will enable the CMTA to continue funding this important research. Thank you.

Nearly 150 researchers and clinicians attended the Second European/North American CMT Consortium sponsored by The Charcot-Marie-Tooth Association.

The Meeting took place Wednesday through Friday, July 18-20, 2007, at the Snowbird Ski and Summer Resort in Utah, and was an official satellite of the Biannual Meeting of the Peripheral Nerve Society, which also took place at Snowbird from July 14-18, 2007.

Following the format of previous meetings of the European and North American Consortia, the emphasis was on exchanging information and encouraging collaboration among European, North American, and other investigators around the world.

On March 15, 2008, 5-year-old Ethan Spade and his Circle of Friends held a one-mile "Walk for the Cure" at Mount Aloysius College in Cresson, PA, to raise money for CMT research.

Ethan, who has CMT, currently wears braces on both legs in order to avoid problems with tightened muscles during the day. He also goes for physical therapy and has a workout routine that he does at home every day.

If you’d like to make a donation in support of Ethan, please visit Ethan’s webpage at www.charcot-marie-tooth.org/Ethan.

Ethan, and everyone affected by CMT, thanks you for your support!

The Charcot-Marie-Tooth Association held a Patient-Family Conference on April 5, 2008, from 9:00 a.m to 3:00 p.m. on the campus of the University of Pennsylvania. More than 160 people attended, and we are currently processing tapes of the event, which we will make available in 6 to 8 weeks.

A Midwestern Patient Fair was held at Wayne State University on Saturday, April 12, 2008. There were plenary talks as well as workshops, and attendees were also able to tour the research laboratories in the Elliman Building.

CMTA Executive Director Charles Hagins and Chicago Regional Membership Director Alan Pappalardo will staff a booth to provide attending neurologists with information on CMT and the work of the CMTA.

In conjuction with the John P. Murtha Neuroscience and Pain Institute, the CMTA will hold a Patient-Family Conference at the Holiday Inn on Market Street in Johnstown, PA, on Thursday, May 29, 2008.

Program details and information on how to register will be provided as soon as they become available.