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Cure SMA

Last Update:7/21/2018
Contact:
Title:
Address:925 Busse Road
Elk Grove Village, IL 60007
County:Nationwide
Phone:847-367-7620
Toll Free:800-886-1762
Fax:847-367-7623
TDY:
E-Mail:
Website:www.cureSMA.org
Mission
Cure SMA funds and directs the leading SMA research programs to develop a treatment and cure for the disease. The successful results and progress that the organization has delivered, from basic research to drug discovery to clinical trials, provide real hope for families and patients impacted by the disease. The charity has invested over $57 million in research and has been involved in funding half of all the ongoing novel drug programs for SMA.
Program Description
SMA is a group of inherited and sometimes fatal diseases that destroy the nerves controlling voluntary movement, such as crawling, walking, head and neck control, as well as swallowing.

Kugelberg-Welander syndrome is a rare inherited disorder in which degeneration of motor neurons causes progressive weakness and muscle atrophy, notably in the legs, accompanied by the loss of reflexes. An early symptom is uncoordinated gait.

In 1984, a small group of parents across the country banded together to support, comfort and educate each other about the devastating disease affecting their children; Spinal Muscular Atrophy. Their purpose was twofold—to support families affected by SMA and to fund research leading to a treatment and eventually, a cure. Families of SMA has grown from this courageous group of families to an international network of fundraising and support including 31 volunteer Chapters throughout the United States.

Services include:
  • Programs For Newly Diagnosed Families,
  • Care packages,
  • Equipment pool,
  • Annual FSMA conference,
  • Information regarding community and local support,
  • Information for healthcare providers,
  • Resources regarding medical issues and daily life.
Financial
Services
Family Support
Spanish speaking community/materials
Support Group
Counties Serviced
Entire State
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.