Dear Friends,
Some families live with a fear most of us can hardly imagine.
For families affected by genetic prion disease, a devastating inherited brain disorder, every generation can carry an unbearable question: Will I be next? Will my children be next?
Genetic prion disease is rare, cruel, and always life-changing. It is caused by an inherited mutation passed down through families, often silently for decades, until symptoms begin to appear. Once they do, the disease attacks the brain rapidly—stealing memory, movement, independence, personality, and precious time with loved ones. Today, there is still no cure and no effective treatment.
For many families, this disease does not strike just once.
Parents have watched children suffer. Children have lost parents far too early. Entire generations have lived under the shadow of uncertainty, carrying the emotional burden of knowing this disease may one day affect them or the people they love most.
But there is hope.
Researchers are making progress toward understanding how genetic prion disease develops and how we can stop it before symptoms ever begin. The science is promising, but breakthroughs require funding, and rare diseases like this often receive far less attention and support than they urgently deserve.
That is why we are asking for your help today.
Your donation will directly support critical research focused on developing treatments, advancing genetic studies, improving early detection, and ultimately finding a cure for families who have waited far too long for answers.
This is more than funding research. It is giving families hope where there has been fear. It is helping future generations live free from uncertainty. It is standing beside families who have carried this burden in silence for far too long. No family should have to inherit a disease with no cure.
Please consider making a donation today and sharing our mission with others. Together, we can help turn scientific possibility into life-saving reality.
The families affected by genetic prion disease cannot wait.
Thank you for your compassion, generosity, and commitment to helping create a future free from this devastating disease.
With sincere gratitude,
Denise Chainey
Strides for CJD Boston
Team Girolamo