Bridging the Voice of ALS Patients | Atsdr

Post author:Rose Duesterwald
Post published:May 20, 2020
Post category:Rare Disease

Bridging the Voice of ALS Patients | ATSDR
Bridging the Voice of ALS Patients Because learning more about ALS is an important step in the battle to defeat it, the National ALS Registry gathers confidential health information from people who are living with the disease to learn more about what causes ALS and possibly lead to better treatments. Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease that attacks the nerve cells. The cause of ALS is unknown, and there is no known cure.

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Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.