The benefits of registering with MDA are tremendous. Here are just a few things that we help you with: Support Groups, equipment, clinic visits, and transportation to your clinic visit.
The local MDA clinic is located at the University of Rochester Medical Center in Rochester, NY. Appointments can be scheduled by calling the MDA office at (716) 424-6556.
The Muscular Dystrophy Association fights 43 neuromuscular diseases through an unparalleled worldwide research effort, a nationwide program of medical services, and far-reaching professional and public health education. Individual MDA research grants to investigators in the United States and abroad number more than 400. The Association's Medical Advisory and Scientific Advisory committees review projects that will increase knowledge in the neuromuscular field and may lead to treatments or cures for muscular dystrophy and related disorders. MDA's Task Force on Genetics oversees studies of all aspects of genetic defects implicated directly or indirectly in neuromuscular diseases. Through MDA's services program, comprehensive medical care is available to children and adults with neuromuscular diseases at some 230 MDA hospital-affiliated clinics and through the Association's chapters.
Support Groups are designed to help those with chronic muscular disorders and their families address the problems these disorders impose. A Support Group offers the participants the opportunity to meet and talk with others facing similar challenges. There is no fee to attend and participate in the support groups, and we encourage family members and friends to attend. The group meetings give the participants the chance to exchange vital information in a comfortable setting. The following is the 2001 schedule for the ALS Support Group: (More Support Groups will be posted soon)
Location: Al Sigl Center, 3399 Winton Road South, Rochester, NY 14623
Facilitators: Cindy Gibson, R.N., Kitty Moran, C.S.W.
|January 11, 2001||April 19, 2001||July 26, 2001||October 18, 2001|
|February 8, 2001||May 10, 2001||August 16, 2001||November 8, 2001|
March 15, 2001
|June 14, 2001||September 20, 2001||December 6, 2001|
NOTE: When canceling a MDA sponsored event or support group due to weather conditions, MDA will have the cancellation announced on the following radio stations: WHAM (1180AM), WVOR (100.5FM), and WPXY (97.9FM). We urge you not to attend a MDA event or support group when road conditions are potentially hazardous.
Consistent with MDA's policy to help enhance independence and maintain mobility for those with neuromuscular diseases, MDA provides assistance in the area of durable medical equipment. In addition to the rules and regulations governing payment for durable medical equipment (as listed in MDA's Service brochure), a local Loan Closet Program is also available.
Here in the Greater Rochester/Finger Lakes area, our equipment pool is located and maintained courtesy of:
295 Monroe Avenue
Rochester, New York 14607
Phone: (716) 546-5294
Fax: (716) 546-4193
As a member of the MDA family, you are welcome to have free use of any equipment currently located in our loan closet. You may keep it for as long as needed. MDA is unable, however, to incur any costs associated in having equipment repaired that is not authorized through our program. Should you decide to borrow a piece of equipment from our loan closet, we will ask you to sign a waiver indicating the same. The waiver releases MDA of any responsibility for the cost of maintaining the equipment and releases the Association from any liability related to the use of the equipment.
When equipment is no longer needed, we encourage its return to the loan closet. MDA also accepts donated equipment from outside sources and would be pleased to make arrangements for its pick-up.
FOR ADDITIONAL INFORMATION OR ASSISTANCE, PLEASE CONTACT:
Health Care Service Coordinator
Muscular Dystrophy Association
3136 Winton Road South, Suite 301
Rochester, NY 14623
Phone: (716) 424-6560
Fax: (716) 424-1446