Print this pageUnited States of America*
- Les Turner ALS Foundation Ltd
- Forbes Norris MDA/ALS Research Center
- The ALS Assocation
- ALS March of Faces
- ALS Hope Foundation
- Communication Independence for the Neurologically Impaired, Inc. (CINI)
- ALSTDF
- MDA, USA
Les Turner ALS Foundation Ltd
Wendy Abrams, Executive Director
5550 West Touhy Avenue, Suite 302
Skokie, Illinois 60077, USA
Tel: International +1 847 679 3311
Fax: International +1 847 679 9109
E-mail: wendy@lesturnerals.org
URL: http://www.lesturnerals.org
Region Covered: | Les Turner ALS Foundation services include the Lois Insolia ALS Center and the Les Turner ALS Research Laboratory at Northwestern, Chicago, IL, USA. Professionals on staff at the Lois Insolia Center include three neurologists, a pulmonologist, clinic co-coordinator, home liaison nurse, social worker, occupation therapist, drug study coordinator, genetic counselor and speech pathologist. The Les Turner ALS Research Laboratory is under the direction of Dr. Teepu Siddique and research is focusing on the genetics of ALS. Other services include support group meetings, loan bank of augmentative communication equipment, grant programs to assist people seen at the Lois Insolia Center with the cost of in-home respite care and durable medical equipment, home visits by our social worker and home liaison nurse and educational meetings. |
Date Founded: | 1977 |
Activities
Les Turner ALS Foundation services include the Lois Insolia ALS Center and the Les Turner ALS Research Laboratory at Northwestern, Chicago, IL, USA. Professionals on staff at the Lois Insolia Center include three neurologists, clinic co-ordinator, home liaison, social worker, occupational therapist and speech pathologist. The Les Turner ALS Research Laboratory is under the direction of Dr Teepu Siddique and research is focusing on the familial form of ALS. Other services include support group meetings and loan bank of communication and durable medical equipment
Forbes Norris MDA/ALS Research Center
Dee Holden Norris, Advisory Director
The California Pacific Medical Center, 2324 Sacramento, San Francisco, California 94115, USA
Tel: +1 415 923 3604/3608
Fax: +1 415 563 7325
Fax: +1 415 673 5184
E-mail: norrisd@cpmcri.org
Region Covered: | Western USA and some International visits |
Date Founded: | 1979 |
Branches/Chapters: | 8 Support Groups |
Activities
- Fully comprehensive, multi disciplinary clinical patient services
- Clinical and basic science research
- Complete patient care and teaching activities
- Fundraising, education, information and referral services
The ALS Association
Jane H Gilbert, President and Chief Executive Officer
Sharon Matland, Alliance Representative
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
Tel: +1 818 880 9007
Fax: +1 818 880 9006
Email: smatland@alsa-national.org
Web site: http://www.alsa.org
Region Covered: | All fifty states of the US |
Date Founded: | 1985 through a merger of the ALS Society of America and the National ALS Foundation |
Branches/chapters: | 39 chapters, 5 chapters-in-organization, some chapter-affiliated support groups, 8 freestanding support groups and 20 ALSA certified ALS Centers (multidisciplinary ALS clinics) |
Activities:
- Funds basic scientific research directed at identifying the cause of, a possible cure for and the means to prevent ALS. Conducts and supports two grant cycles per year.
- Is the vital link for patients and their families to information, counselling, physician referrals, in home visits, respite care and coping with the day-to-day challenges that living with ALS presents. Through its network of chapters, support groups and ALSA Centers, delivers patient services to patients, their families and caregivers at the community level.
- Provides education and information programs and in-services training for health care professionals
- Carries out national and local public awareness and education programs through media relations, public service videos, etc., to stimulate volunteerism, scientific and health care community activism, and public support essential to fight ALS.
- Works with elected representatives to federal government, government agencies such as the National Institutes of Health and the Food and Drug Administration (FDA) and human service agencies to expand government support of research and to elicit programs to make treatments and care accessible and affordable for all ALS patients
ALS March of Faces
Ms Vicki L. “Terry” Frank
2316 Pine Ridge Road#391 Naples FL34109, USA
Tel: +1 239 417 5458
Toll Free: (877) 884 4798
Email: als@march-of-faces.org terry@march-of-faces.org (Terry Frank)
Website: www.march-of-faces.org
A | Associate Member of the International Alliance |
ALS Hope Foundation
Terry Heiman-Patterson, President
Jeffrey S. Deitch, Director
219 North Broad Street, 7th Floor, PO Box 40777, Philadelphia, PA 19107
Tel: + 215 551 0967
Fax: + 215 762 8634
Email: info@alshopefoundation.org
Website: www.alshopefoundation.org
Region Covered: | United States of America |
Date Founded: | 1999 |
Branches/chapters: |
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Activities
- Provides long-term support to basic and clinical research programs leading to a cure
- Provides support for research at clinical centers of excellence for the care and treatment of patients with ALS
- Offers support for research to promote independence of the patient
- Supports programs that promote patient and physician education about the ALS research and the research process
A | Associate Member of the International Alliance |
Communication Independence for the Neurologically Impaired, Inc (CINI)
Peter Strugatz, President
PO Box 263, Manorville, New York 11949, USA
Tel: +1 516 465 1629
Fax: +1 516 465 3744
E-mail: cini@cini.org
URL: http://www.cini.org
Region Covered: | International |
Date Founded: | 1993 |
Branches/Chapters: | 1 |
Activities
- International resource centre for communication and swallowing for ALS/MND patients
- Publication of resource guide: 'Communication and swallowing solutions for the ALS/MND community: a CINI manual'
- Professional Education
- Communication and support of electronic bulletin boards
- Website
A | Associate Member of the International Alliance |
ALSTDI - ALS Therapy Development Foundation
Jessica Hartley - Contact
215 First Street, Cambridge, MA 02142, USA
Tel: +1 617 441 7200
Fax +1 617 441 7299
Email: info@als.net
Website: www.als.net
Region Covered: |
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Date Founded: | 1999 |
Branches/Chapters: |
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Activities
- The ALS Therapy Development Foundation is a non profit biotechnology company Seeking effective treatment for ALS. Founded in 1999, TDF operates the largest preclinical testing center for ALS in the world. To date TDF has evaluated more than 700 therapies and conducted more than 250 mouse studies. Currently, two of TDF’s drug candidates are in clinical trial at the ALS Center at the University of California, San Francisco and a third is in process.
- The ALS TDF research program is designed to:
- Identify the most promising drug targets and therapeutic compounds
- Screen potential therapeutics in the ALS validation program
- Overcome barriers in effective research
- Openly share results in real time with doctors, patients, and researchers
F | Full Member of the International Alliance |
Muscular Dystrophy Association, USA
Annie Kennedy, MDA Vice President - Advocacy
National Advocacy Office
1025 Connecticut Avenue, NW
Suite 907
Washington, DC 20036, USA
Tel: +1 202 828 8560
Fax: +1 202 828 8566
Email: akennedy@mdausa.org
Website: www.als-mda.org
Region Covered: | Untied States, including Puerto Rico |
Date Founded: | 1952 |
Branches/Chapters: | 197 offices, 225 MDA clinics, 36MDA/ALS Centers |
Activities
· Publications:
MDA/ALS Newsmagazine
Quest Magazine
Everyday Life with ALS
A Caregivers Guide to ALS
With Hope & Courage: ALS DVD
Breathe Easy
101 Hints with Ease
Facts About ALS
Meals
Emergency Preparedness materials
MDA Services brochures
Milestones in ALS Research brochure
· Awareness/Advocacy Campaigns:
National ALS Awareness month campaign – May
ALS: Anyone’s Life Story campaign
Legislative Activities
MDA Telethon – Labor Day weekend
· Services:
225 hospital affiliated MDA Clinics, 36 MDA/ALS Centers nationwide; 5 regional MDA/ALS Research Centers throughout the U.S.A
Support Groups – over 65 ALS-specific support groups offered across the nation
Financial assistance with equipment purchases and repairs (includes purchase of wheelchairs, leg braces, and augmentative communication devices)
Durable Medical Equipment Loan Closet program – loaning lightly-used durable medical equipment items, available in all 50 states
Public Health Education – Symposium, seminars, informational displays at health fairs
Advocacy – includes a national federal, legislative, health policy effort, as well as individualized advocacy efforts within local communities of PALS
· Research Program:
MDA funds ALS research in a comprehensive range of categories:-
Basic Science, Developmental, Drug Discovery, Pre-Clinical, Human Clinical Studies, and Human Clinical Trials
MDA’s current 3-year commitment to ALS Research projects – $24,756,209
MDA currently funds research in Belgium, Canada, Chile, France, Netherlands, United Kingdom and United States