Lymphoma Research Foundation of America

8800 Venice Blvd. #207
Los Angeles, CA 90034
310-204-7040
fax 204-7043
http://www.lymphoma.org
lrfa@aol.com

Founded in 1991 by a low grade NHL survivor Ellen Cohen, the foundation focuses primarily on supporting ongoing lymphoma research through grants. They make awards to researchers with particularly valuable projects who have been unable to secure funding. They will send you a list of recently awarded grants (also available on their web site), and if you send a contribution, you will receive their quarterly newsletter called Lymphoma Update. They sponsor a lymphoma support group in the L.A. area, and have a computer database of people with NHL who are willing to share their experience with particular therapies, or to provide support to the newly diagnosed. They can search for each cell type to make a close match. They can also help those searching for the right clinical trial.

They sponsor a national lymphoma awareness week in October each year, and last year organized the first day-long educational forum on lymphoma with lectures on a variety of topics, including one on "What's New on the Research Horizon." This year's educational forum in Houston was a 2-day event, and included a lecture on alternatives. Videotapes are available of both forums.

Updated 12-5-1998
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Cure for Lymphoma Foundation

1 Dag Hammarskjold Plaza
New York, NY 10017
212-319-5857
fax 758-8950
http://www.cfl.org

Started in 1994 by Barbara Freundlich whose husband is a high grade lymphoma survivor. Their goals are three-fold:

1. Raising money for research grants.
2. Support and education.
3. Small individual grants are available to patients.

They recently received a grant to expand their resource library so that medical journal articles, periodicals, books and audio tapes and other timely materials can be provided to patients. A bibliography will be available so that copies of articles, books and tapes can be ordered.

Updated 10-10-98
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The Alliance for Lymphoma Survivors

PO Box 9893
Washington, DC 20016

This organization was started in 1996 by a group of lymphoma survivors wishing to engage in activism. They aim to "inform and influence public policy and perceptions concerning issues that impact us as cancer survivors." Their goals are as follows:

1. to represent the interests and advocate for the rights of survivors regarding all issues that affect the quality of life for lymphoma survivors
2. to increase public awareness of lymphoma, including its long term survivability, epidemic increase, and environmental causes
3. to promote the dedication of increased resources for research concerning the causes, prevention, and treatment of lymphoma
4. to facilitate communication about and between lymphoma survivors, health care providers, disability groups, and support service organizations
5. to provide a forum for interaction among lymphoma survivors to share information on treatment, post-treatment, and survivorship issues

I just heard this organization is about to dissolve.

Updated 10-29-01
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Lymphoma Foundation of America

PO Box 15335
Chevy Chase, MD 20825
202-223-6181
fax 301-588-5920

LFA was founded in 1986 by people with lymphoma who came together to help each other recover from cancer. They organized the first lymphoma support group in the U.S., which still meets monthly in the DC area. They will send you a list of helpful books and articles, and a list of lymphoma specialists around the country. They offer:

1. Peer counseling. If you are newly diagnosed, they will put you in touch with someone who has recovered from lymphoma.
2. Self-help support group. Meets every month and provides an informal setting where people with lymphoma and their families and friends get together for discussion.
3. Second opinions. They will help you get a second opinion if time is short.
4. Advocacy. If you have been discriminated against by your employer on account of your illness, they can put you in touch with legal help.
5. Special events. They will let you know about upcoming educational programs, lectures and events for cancer survivors.
6. Policy. They participate with other groups dedicated to improving the access to care and quality of life for people with cancer.

Updated 12-10-95
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Leukemia Society of America

National Office
600 Third Avenue
New York, NY 10016
1-800-955-4LSA (hotline)
212-573-8484
http://www.leukemia.org

This is the oldest group, with a partial focus on lymphoma (along with leukemia and multiple myeloma). Founded in 1949, it has chapter offices in many states. The Society supports four major programs: research, patient aid, public and professional education, and community service. It provides financial aid to patients (up to $750 a year) and sponsors research funded though its fundraising efforts. The Society also conducts a national program of public and professional education to bring the medical and scientific communities up to date on current findings.

They have patient education booklets on lymphomas, as well as information on the organization itself and its grant awards. They may be able to refer you to a LSA-sponsored support group in your area. They report that about 48% of their research funds go toward lymphoma research.

Updated 12-10-95
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Written by Vera Bradova © 1998
Updated 10-10-1998