Dear Friends - We need your help to find a cure for neurological prion diseases, including our family’s killer, familial Creutzfeldt-Jakob Disease (CJD).  Lee Glavan-Gallagher and her brother Fred Glavan died in 1984 and 2000 respectively,

• Lee Gallagher was a caring and unique person.  She was both a career woman and a mother who created the place to hang out for her kids and their friends.
• Fred Glavan lived by the motto “work hard, play hard.”  Fun times involved all kinds of things from fishing and camping to traveling and filming. 

At the time there was little awareness of prion disease, its cause, or what to do for the patients or the devastated families left behind.  We looked to the CJD Foundation and the research community to find a path forward to better understand the disease, raise awareness, and search for treatments and a possible cure.

Since 2022 we’ve raised more than $110,000 because family and friends know prion disease research is important for all of us.  Why do we say that?

• Because treatments developed for CJD could very likely be modified and aimed at other neurodegenerative diseases including Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRDs).
• Because CJD has a known single target for drug development – the prion protein – it has proven possible, effective, and accurate to study CJD and related dementias in animal models.
• Because, ultimately, prion diseases can impact anyone.  We all have prion proteins and only 15% of CJD cases are caused by a familial genetic mutation.  The majority of cases are called sporadic CJD (sCJD) and progress rapidly, with death occurring in as little as two weeks. 

The CJD Foundation and their support of prion researchers worldwide have made amazing progress, including:

• Development of the RT-QuIC test which is able to quickly identify prion disease in symptomatic individuals. 
• Setting the stage for the first in-human, randomized, multi-center clinical study in participants with prion disease is currently taking place at Ionis Pharmaceuticals, Inc.
• Studying techniques on protein-based gene therapy, small molecule therapeutics, and reprogramming donor cells and growing them into neurons and organoids (3-dimensional cell cultures).

Not only is this progress critical in its own right, it has resulted in companies and research groups like NoblePharma, Sangamo Therapeutics, Gate Bioscience, and the Center for Cooperative Research in Biosciences looking to launch their own clinical trials beginning in three to five years.

The CJD Foundation awarded $850,000 in January 2025 to prion disease researchers.  All of the funds we raise with the Fred Glavan/Lee Gallagher Family Memorial Grant goes to research grants – and we mean EVERY PENNY.

So please, join us because together we are making a difference! 

     Phillip Glavan, Pat Elliot, Martin Glavan and Donna Gallagher