Diagnosed with ALS at Age 29, Leah Advocates to Increase Funding for Research


Many people living in rural areas of the U.S. must drive a long distance to receive their medical treatments. According to Yahoo News, twenty-nine-year-old Leah Stavenhagen, now living and working in France, flies from France to the U.S. for treatment every month. Leah has been diagnosed with ALS.

Leah’s father, who is a research scientist, located neurologists in the U.S. who are currently working on treatments for the disease. By mid-2020, Leah began treatment through an FDA program called extended access. The program, also called compassionate use, allows patients with a life-threatening condition to receive investigational drugs outside of clinical trials when no other alternative options are available.

About Leah’s Diagnosis

It took a year and a half for twenty-nine-year-old Leah, a former synchronized swimmer, to come to the realization that her cramps, stumbling, and muscle twitches were signs of a serious disorder. It was then that she was diagnosed with amyotrophic lateral sclerosis (ALS).

The relief that she finally understood why she had these symptoms became a realization that she must now face life with a rare, debilitating, and fatal disease.

About ALS

ALS is a neurodegenerative disease that has no cure. Motor neurons gradually die, and the brain cannot control movements. Within one year Leah’s health deteriorated to the degree that she lost most of her strength and therefore her independence. Leah describes her condition as watching her future evaporate. Thinking long-term about future events is almost impossible.

Leah wanted to exchange thoughts and life experiences with other ALS patients in her age category. She eventually found the answers in advocacy organizations and even founded Her ALS Story, focusing on young women like herself.

One very difficult problem for young women is how to handle relationships after receiving a diagnosis of ALS. Leah is pleased when she hears that someone wants to join because they have been looking for this type of support. She calls the responses powerful and heartwarming. The groups have been a two-way street. Lisa has shared her hope with others and others have brought more hope to Lisa.

A New Phase in Her Life

Leah decided to get married last year. Her husband is very attentive, and people often express admiration for their devotion. On the other hand, people make comments to Leah about how difficult it must be and go as far as saying that they “could not do it.” She just asks for understanding that her life may not be lower in quality than theirs.

Her motto is that even if you are faced with a tremendous obstacle, you can still have a full life and make a world of difference. Recently Congress passed the Act for ALS bill and Leah was one of many ALS supporters who urged representatives and senators to support the bill.

Leah has a fervent desire to bring awareness of the disease and increase funding dedicated to research for treatment and a cure.

Progress or Progression?

Leah explains that it is difficult to differentiate between a slight improvement in her condition brought on by the treatment or whether it is a disease progression that has plateaued. She has noticed several slight changes that are enough to bring about new hope that “there are things out there” that can help.

Rose Duesterwald

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.

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