Help Support The Research Towards the Tay-Sachs Cure
The Cure Tay-Sachs Foundation
This foundation has been around since 2007, promoting Tay-Sachs research, working hard to bring awareness to the seriousness of this disease.
"The three years that are needed to identify the best approach for the disease will cost between $1.9 and $2.3 million. The first year cost of $423,000 has already been funded, the year cost of $572,000 is currently being funded. The need for an additional year at a cost of $361,000 will be dependent upon 2009's success in cat and sheep. Efficacy and toxicity studies will be required by the FDA at a cost of nearly $1 million.” (Cure Tay-Sachs Foundation). You can help by making a donation here.
You can find an online brochure here. We urge you to spread the word and awareness of Tay-Sachs.
Contact information:
Cure Tay-Sachs Foundation
12730 Triskett Road
Cleveland, OH 44111
www.CureTay-Sachs.org
EIN or Tax ID# 26-0256621
Phone: (216) 812-5855
Fax: (216) 251-6728
Contact: Kenneth Bihn, President
[email protected]
"The three years that are needed to identify the best approach for the disease will cost between $1.9 and $2.3 million. The first year cost of $423,000 has already been funded, the year cost of $572,000 is currently being funded. The need for an additional year at a cost of $361,000 will be dependent upon 2009's success in cat and sheep. Efficacy and toxicity studies will be required by the FDA at a cost of nearly $1 million.” (Cure Tay-Sachs Foundation). You can help by making a donation here.
You can find an online brochure here. We urge you to spread the word and awareness of Tay-Sachs.
Contact information:
Cure Tay-Sachs Foundation
12730 Triskett Road
Cleveland, OH 44111
www.CureTay-Sachs.org
EIN or Tax ID# 26-0256621
Phone: (216) 812-5855
Fax: (216) 251-6728
Contact: Kenneth Bihn, President
[email protected]
National tay-sachs & Allied Diseases : Association of Delaware Valley
You may also donate here. The National Tay-Sachs Disease & Allied Diseases Association of Delaware Valley is a non-profit organization, dedicated to researching to eliminate Tay-Sachs.
This organization also offers free screenings, so you should take advantage of this. For more information, click here.
Contact Information:
National Tay-Sachs & Allied Diseases
Associaton of Delaware Valley
720 Greenwood Avenue
Suite 300
Jenkintown, PA 19046
Phone: (215) 887-0877
Fax: (215) 887-1931
This organization also offers free screenings, so you should take advantage of this. For more information, click here.
Contact Information:
National Tay-Sachs & Allied Diseases
Associaton of Delaware Valley
720 Greenwood Avenue
Suite 300
Jenkintown, PA 19046
Phone: (215) 887-0877
Fax: (215) 887-1931
Canadian Society for Mucopolysaccharide and Related Diseases Inc. (Canadian MPS Society)
This organization was founded in 1984. The Canadian Society for Mucopolysaccharide and Related Diseases Inc. (The Canadian MPS Society) is committed to providing support to individuals and families affected with MPS and other related diseases, educating medical professionals and the general public about MPS, and raising funds for research so that one day there will be cures for all types of MPS and related diseases. The Society is a registered charity governed by its Board of Directors with the support and expertise of its Medical Advisory Board.
Contact Information:
Canadian Society for Mucopolysaccharide and Related Diseases Inc. (Canadian MPS Society)
P.O. Box 30034, RPO Parkgate
North Vancouver, BC V7H 2Y8
Canada
Toll-free: 800-667-1846
Telephone: 604-924-5130
Fax: 604-924-5131
E-mail: [email protected]
Website: http://www.mpssociety.ca
Contact Information:
Canadian Society for Mucopolysaccharide and Related Diseases Inc. (Canadian MPS Society)
P.O. Box 30034, RPO Parkgate
North Vancouver, BC V7H 2Y8
Canada
Toll-free: 800-667-1846
Telephone: 604-924-5130
Fax: 604-924-5131
E-mail: [email protected]
Website: http://www.mpssociety.ca
Chicago Center for Jewish Genetic Disorders
Chicago Center for Jewish Genetic Disorders is a place where individuals can learn about hereditary cancers and Jewish genetic disorders. The Center informs community members and raise awareness of available options regarding the disorder. This is also place where people can get genetic screenings and genetic counseling to plan for a healthy future.
Contact Information:
Chicago Center for Jewish Genetic Disorders
30 South Wells St.
Chicago, IL 60606
Telephone: 312-357-4717
Fax: 312-855-3295
E-mail: [email protected]
Website: http://www.jewishgeneticscenter.org
Contact Information:
Chicago Center for Jewish Genetic Disorders
30 South Wells St.
Chicago, IL 60606
Telephone: 312-357-4717
Fax: 312-855-3295
E-mail: [email protected]
Website: http://www.jewishgeneticscenter.org
Jewish Genetic Disease Consortium (JGDC)
The Jewish Genetic Disease Consortium (JGDC) increases awareness about Jewish genetic diseases (JGDs) and encourages timely and appropriate genetic screening for all persons of Jewish heritage. The JGDC is an alliance of not-for-profit organizations sharing a common goal of combating Jewish genetic diseases.
Contact Information:
Jewish Genetic Disease Consortium (JGDC)
315 West 39th Street, Suite 701
New York, NY 10018
Toll-free: 866-370-GENE (4363)
Telephone: 212-362-4675
Fax: 212-873-7892
E-mail: [email protected]
Website: http://www.JewishGeneticDiseases.org
Contact Information:
Jewish Genetic Disease Consortium (JGDC)
315 West 39th Street, Suite 701
New York, NY 10018
Toll-free: 866-370-GENE (4363)
Telephone: 212-362-4675
Fax: 212-873-7892
E-mail: [email protected]
Website: http://www.JewishGeneticDiseases.org
Genetic Alliance
Genetic Alliance is committed to promoting health to genetic disorders and open health to all individuals, families, and communities. The network provides resources , creative tools, and programs.
Contact Information:
Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC 20008-2369
Telephone: 202-966-5557
Fax: 202-966-8553
E-mail: [email protected]
Website: http://www.geneticalliance.org/
Contact Information:
Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC 20008-2369
Telephone: 202-966-5557
Fax: 202-966-8553
E-mail: [email protected]
Website: http://www.geneticalliance.org/
March of Dimes
March of Dimes helps mothers have full-terms pregnancies and research the diseases and problems that threaten the health of their babies.
Contact Information:
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Toll-free: 888-663-4637
Telephone: 914-997-4488
Fax: 914-997-4763
E-mail: http://www.marchofdimes.com/contactus.html
Website: http://www.marchofdimes.com/
Contact Information:
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Toll-free: 888-663-4637
Telephone: 914-997-4488
Fax: 914-997-4763
E-mail: http://www.marchofdimes.com/contactus.html
Website: http://www.marchofdimes.com/
National Organization for Rare Disorders (NORD)
National Organization for Rare Disorders support people who are diagnosed with rare disorders and dedicated to assisting the organizations that help them. The organization is committed to identification, treatments and a cure to rare disorders.
Contact Information:
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 800-999-6673 (voicemail only)
Telephone: 203-744-0100
TTY: 203-797-9590
Fax: 203-798-2291
E-mail: [email protected]
Website: http://www.rarediseases.org/
Contact Information:
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 800-999-6673 (voicemail only)
Telephone: 203-744-0100
TTY: 203-797-9590
Fax: 203-798-2291
E-mail: [email protected]
Website: http://www.rarediseases.org/
Social Networking Sites
DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
Madison's Foundation
Madison's Foundation is a website which allows parents to connect with other parents who has children who have the same disease. It is a social network for parents to talk and connect with other parents.
Contact Information:
Madisons Foundation
P.O. Box 241956
Los Angeles, CA 90024
Telephone: 310-264-0826
Fax: 310-264-4766
E-mail: [email protected]
Website: http://www.madisonsfoundation.org/
Contact Information:
Madisons Foundation
P.O. Box 241956
Los Angeles, CA 90024
Telephone: 310-264-0826
Fax: 310-264-4766
E-mail: [email protected]
Website: http://www.madisonsfoundation.org/