• Lorri Cavaliere posted an update 9 months ago

    This is ridiculous! It’s been over 150 years since the diagnosis of this horrific disease. NurOwn showed promise in some people. Give everyone the chance to live…a carrot is being dangled and it is simply cruel and inhumane. My 29 year old daughter was diagnosed with ALS in August of 2020. The fact that we have to beg to give our children, husbands, wives, mothers, fathers, sisters, brothers, and friends is incredibly surreal. I am so angry, 😠

    • …a right to live…

    • Lorri, your feelings are understandable. As most of us in our community know, and are frustrated by, ALS is a Rare Disease and Rare Disease do not get much attention in the field of research or as much funding to cure them. Rare Disease Day is this week end. It is an opportunity for all of us impacted by a Rare Disease to draw attention to our cause. You can post about ALS on social media, write an article and send to a website or paper, or bring it up in conversation. It doesn’t matter how you inform and educate others as long as we all pitch in! Perhaps if our community, along with other Rare Diseases community members, are louder and more visible we can help to raise awareness and funds.

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