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World Rare Disease Day in 30 Days! — 4 Comments

  1. I had heard of Jeans for Genes day, In the UK my nephews paid to be allowed to wear jeans instead of school uniform for the day. The schools raised money that way;

    I think a lor of people don't realise that little money goes into reseach for rare diseases

  2. I've always known that my mother's side of the family had some serious neurological diseases among them, and even stressed about Alzheimer's after she died of it. So this diagnosis didn't come out of the blue for me.

    I've never worked in an office, so I'd never heard of Jeans for Genes. When these diseases show up in infancy they are so terribly serious and life threatening. It's going to take serious money for research to conquer these genetic diseases.

  3. Thank you for sharing your story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. It is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace — a support group for people and families affected by LAL deficiency. I wish your family well! Mary Pruitt http://www.lalsolace.org

  4. Thanks for stopping by.

    I'm so sorry for your loss, Mary, but I know your website is helping other families dealing with this terrible disease. I pray the researchers find an enzyme treatment that will provide a treatment for Wolman Disease.

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