In 2018, our dear friend Evan Campa was diagnosed with ALS (amyotrophic lateral sclerosis), most commonly known as Lou Gherig's disease. Evan is 40 years old and has two kids, Mae (6 years old) and Reuben (4 years old) with her loving husband of 7 years, Eben Cathey.


ALS is a progressive neurological disease that affects nerve cells in the brain and the spine that leads to the loss of muscle control. There is no cure for ALS and it is most often fatal within 2-5 years. But Evan is determined to do everything possible to find a way to live and see her kids grow up.


Evan quickly becomes one of the favorite people of anyone she meets. And everyone who knows Evan, knows that she is a community builder. She has brought so many people together over the years - through dinner parties, craft projects, costumery, and wild escapades. She and Eben have built a life and a young family rooted in a sense of adventure and possibility.

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When their children were both under three years old, Evan and Eben moved to Chennai, India, for Eben’s work as a member of the United States Foreign Service. While in India, Evan continued her career as an autism therapist, working to build a program for children with autism in partnership with a local organization.


While living in Chennai, she noticed some odd cramping in her leg, which worsened over time. Evan and her family had to leave India to seek testing at Johns Hopkins. After several weeks of brutal tests, she received the ALS diagnosis. They could not return to India and found themselves without jobs, healthcare, and a place to live with their two young kids. Despite these challenges, Evan never stopped moving forward and imagining a bright future for her family.


The ALS diagnosis has completely transformed the lives of Evan and her family. Over the years, Evan and Eben have created a powerful and loving network of friends and family who have always been inspired by their endless sense of possibility. It is in that spirit that we are working to raise funds to support them through this journey.

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 The funds raised through this campaign will support the family with the extraordinary costs of living with ALS - from medical expenses to home modifications. The costs associated with the disease can be upwards of $200,000 per year. The funds raised will also help Evan to access promising new treatments and trials, which often are not covered by insurance, but will give Evan a chance to live.


Though there is not yet a cure for ALS, Evan has tirelessly researched clinical trials and therapies. In 2019 she was accepted into a phase 3 clinical trial. Despite the trial requirements that she would have to travel from Nashville to Boston 14 times, have her bone marrow removed from her hip, receive 3 injections into her spine, and undergo 5 spinal taps for only a 50% chance that she would receive the experimental treatment and not the placebo, Evan agreed to participate immediately. She is currently enrolled in a new clinical trial at Northwestern in Chicago.


Evan spends time advocating for legislation that will accelerate treatments, works with support groups for families fighting ALS, and is relentlessly searching to find the cause of her ALS, which hopefully will lead to a treatment.


We love Evan and are continuously inspired by her courage and hope. Evan has been determined to build a beautiful life for her children while doing everything she can to fight ALS. Through this campaign, we can support their family through the impacts of living with ALS and the fight for her future. 


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Thank you for your support,


Amy Graves, Esther Lindström, Leah Hashinger, Linda Wei, Melissa Eli, Rachel Goodrich, and Stephanie Teatro

Dennis Kaltreider

Katie Herrington

Patrick Levine

Anonymous

Tom & Vicky Lisi

Liliana Wagner

Ferry Rebergen

Mary Gavri

K BELL

Jamie Smith

Judith Byrd

Jennifer Chalos

Alexis  Wolff

Ellen Gallagher

Erin Kitchell

Elizabeth Gardner

Misia Landau

Support Evan & Her Family in the Fight Against ALS

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Support Evan & Her Family in the Fight Against ALS

Still $40,820 to go. Help us build momentum.