Donation of Tissue for Research

Consider giving the most precious gift

In recent years, researchers have learned a great deal about amyotrophic lateral sclerosis (ALS), a fatal neuromuscular disorder – but there is still much more to discover.  At this time, we still don’t know what causes ALS or how the disease is triggered.   Investigators are searching for the answers to these and many other puzzling questions about ALS in their efforts to find effective treatments and ways to prevent the disease.

Because ALS is a disease of the motor neurons located in the brain and spinal cord, it is difficult to access this tissue in people living with ALS.  Researchers often use donated postmortem tissue to study ALS.  However, there is a scarcity of ALS brain and spinal cord tissue for research studies.

Tissue from people living with ALS is a critical resource for researchers.  When ALS tissue and complete information about the donor’s ALS history are compared, researchers are able to piece together information that will eventually provide answers.  Researchers compare ALS tissue with non-diseased tissue.  They compare the tissue of people diagnosed with ALS with different histories, including variances in their age of onset and time of diagnosis, disease progression, care and treatment.

Persons with ALS and their families realize the importance of research into the cause of ALS because understanding the cause of the disease may offer 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, the decision or commitment to donate tissue upon their death may be difficult, especially when coping with the day to day challenges of ALS.  However, many find that committing to be a tissue donor provides them with a sense of purpose or comfort in knowing that the donation will contribute to the quest for knowledge about ALS.

People living with ALS who choose to donate tissue need to plan ahead since there are few medical centers prepared to perform the tissue donation procedure effectively.  There is also a limited window of opportunity after death to realistically harvest tissue.  If you are considering tissue donation, contact your physician or a center listed in the attached document now for information specific to you and your local community.

To learn more about being a donor, discuss tissue donation with your primary care physician and/or your neurologist.  Learn about how the donation process is carried out, the exact steps that will be expected of your family and the timeline required to fulfill the donation -- particularly if you live in a city other than where your ALS clinic and neurologist are located.  Also, clarify specifically how, by whom, and when the expenses for the donation process, including transportation to the facility, will be covered.

For more information about where ALS tissue donation is available, contact The ALS Association at (800) 782-4747 or refer to the attached listing of medical centers.

A lasting legacy can be the donation of brain and spinal cord tissue for ALS research.

>> View a list of facilities accepting tissue for ALS Research.

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