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The Weber Family

“Our connections to ALS run deep & very personal… Our dad passed away from ALS and, of his nine children, five have been diagnosed and we’ve already lost two of our siblings. The next generation of our family—eighteen children—each have a 50/50 chance of carrying the genetic mutation. This couldn’t be more personal.

Our family was looking for an organization focused entirely on research and structured to promote collaboration and diligence. When we connected with Project ALS, they were responsive, compassionate, and patiently answered our barrage of questions. Working with Project ALS has given our family hope for the first time in a very long time.

Over the past year, they’ve helped connect us with researchers interested in our family’s particular genetic mutation. Together, we’ve developed a targeted fundraising campaign, NextGen ALS, to bolster Project ALS’ support of these research efforts. We are very thankful for the guidance and continuous support of everyone at Project ALS.”

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