DONATION OF TISSUE FOR RESEARCH

Consider giving the most precious gift


Researchers have learned a great deal about amyotrophic lateral sclerosis (ALS), a fatal
neuromuscular disorder, in the past dozen years. Yet, we still do not have all the answers as to what causes
ALS or how it begins. Investigators are searching for the answers to these and many other puzzling questions
about ALS in their effort to find effective treatments and ways to prevent the disease.
Because ALS (often called Lou Gehrig’s disease) is a disease of the motor neurons that are located in the
brain and spinal cord, it is difficult to access this tissue in patients. Brain research using postmortem tissue is
critical to understanding ALS. However, there can be a scarcity of ALS brain and spinal cord tissue for
research studies.
Human tissue of ALS patients is the most precious resource for ALS researchers. ALS tissue when
combined with complete information about the donor’s ALS history will help investigators find answers.
Researchers will compare ALS tissue with non-diseased tissue. They will compare tissue of patients with
different histories - age of onset and time of diagnosis, progression of the disease, care and treatment during
the course of the disease, and other vital information - to unravel the mystery of why and how ALS begins
and then progresses to a tragic end.
Persons with ALS and their families realize the importance of research into the cause of ALS, as
understanding the cause offers the best opportunity for finding and producing effective therapies to treat and/
or prevent ALS in the future. Many people have already played a key role in advancing the knowledge
about ALS by providing blood samples, muscle biopsies and other specimens.
For some people, this decision or commitment to donate tissue upon their death may be difficult, especially
when coping with the day to day challenges of ALS. However, it may offer a sense of purpose or comfort to
know that one will be contributing to the continuing quest for knowledge about ALS.
The ALS Association is currently sponsoring a program to help neurologists and select medical centers
coordinate and fund tissue donations for ALS research.
To learn more about being a donor, discuss tissue donation with your primary care physician and/or your
neurologist. Discuss how the donation process is carried out, particularly if you live in a city other than where
your ALS clinic and neurologist are located.
For more information about where ALS tissue donation is available, contact The ALS Association at (800)
782-4747 or refer to the following list of medical centers.

http://www.catfishchapter.org/docume...ueDonation.pdf