Made possible by a grant from Pennsylvania to the CMTA, a patient-family conference on Charcot-Marie-Tooth Disorders will be held on Saturday, May 30, 2009, at the Kasych Pavilion, Lehigh Valley Health Network, Cedar Crest Site, Cedar Crest & I-78, Allentown, PA 18105.

The conference will begin with registration and continental breakfast from 8:00 to 9:00 am. Following registration, Dr. Glenn Mackin, neurologist and Director of the LVHN Neuromuscular Diseases Center, will discuss the diagnosis and evaluation of CMT. At 10:00 am, the new Chief Executive Officer of the CMTA, David Hall, will discuss the research efforts and direction of the organization. The final morning presentation will be Gary Michalowski, C-Ped, CFO, BOCP, who will discuss the options in bracing for CMT patients.

At noon, attendees will enjoy lunch and the opportunity to speak personally with the doctors and other patients.

At 1:00 pm, the afternoon program will begin with a presentation by Allyn Danni, P.T. from Lehigh Valley Health Network, Trexlertown, who will discuss exercises and therapies for CMT patients. At 2:00 pm, Dr. Sara Bouraee will discuss foot and ankle corrections and surgeries for the CMT foot. The final presentation will be by Betsy Green, O.T. from Healthworks, who will discuss aids for daily living and care of the CMT hand.

Time will be allotted for questions following each presentation.

We're sorry, we have reached capacity and registration for the conference is closed.

Questions? Call us at 1-800-606-2682 or email us at conference@charcot-marie-tooth.org.

Once again, Steve O'Donnell will swim 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. Together with his daughter Jaime and friends, he will be swimming to make the 2009 Swim for the Cure the most successful ever.

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 in Steve's honor is actually used to fund research by the best scientists in the world.

Through your generous support of Steve and all those who "swim for the cure," you will enable the CMTA to continue funding this important research and bring us that much closer to our goal of a world without CMT.

Please click here if you would like to make a donation. Thank you.

GCC's Rock 'n Run for CMT Research
5K Road Race and Family Festival
Charlestown, RI
June 28, 2009

Please join us on Sunday, June 28, 2009, for a day of family fun from 10:00 a.m. to 5:00 p.m. at Ninigret Park, Old Post Road, Charlestown, RI.

Local bands will play all day, so bring the kids and enjoy face painting, crafts, pony rides, bouncy tent, dunk tank, popcorn, cotton candy and more!

Check in for 5K racers is 8:30 a.m. (rain or shine); register now at www.needtorace.com.

Please click here for details.

CMTA Chairman Patrick Livney will host the Fourth Annual CMT Golf Tournament on July 27, 2009, at the Merit Club. All proceeds from the event will go to support the CMTA and the STAR initiative to help find the cure for this debilitating disorder.

Last year's Third Annual CMT Golf Tournament was a great success and the event raised an amazing $220,000. Mr. Livney hopes this year's event will be even more successful.

The tournament is limited to 20 foursomes, so if you would like to sign up or make a donation, please call 1-800-606-2682 today.

This event will be held at the National Aviary in Pittsburgh starting at 11:00.  Admission is free for both parents and children, and lunch will be provided at the Aviary, so come enjoy the wonderful day the Aviary has planned for your child.

Children of all ages are welcome, and this will be a perfect opportunity for your child to connect with other children with CMT.  It will also give you a chance to connect with other parents for support and maybe even exchange some tips.

If you are interested in attending this event with your child, please contact Jeana Sweeney at 814-262-8427 or cjsween@verizon.net by August 18, 2009.

For more information about the aviary, please visit www.aviary.org.

"Princess" Grace and Chris Caldarone at the 2008 GCC dinner.

Grace's Courage Crusade 2nd Annual Dinner Party
Narragansett, RI
September 26, 2009

Please join us on September 26, 2009, from 5:00 to 10:00 p.m. for an evening of fun and friendship in honor of Grace Caldarone in the Grand Ballroom of The Village Inn, One Beach Street, Narragensett, RI.

Dinner will be catered by Amalfi Restaurant, and there will also be a dessert auction, balloon raffle and silent auction.

Tickets are $40 per person, and all proceeds will go to the Charcot-Marie-Tooth Association research fund.

To purchase tickets now, please click here, or send your check payable to CMTA along with a self-addressed stamped envelope to Tonia Hassell, 108 Browns Farm Dr., Kingston, RI 02881, and tickets will be mailed to you.