IJDF Founding

By: Sheri Rogers Bashor 2001/2002

Thank You Rose Marie Silva.

Rose Marie Silva is a very remarkable woman! Rose Marie was instrumental in helping Medical researchers discover Machado Joseph Disease (MJD) in the mid 1970's.

At ten years of age young Rose Marie vowed she would one day find out what "strange secret illness" had killed her grandmother and numerous relatives in her family. Her father died from MJD when she was twelve years old. Her brother George would die from MJD years later.

Rose Marie's childhood vow came true after thirty years of searching for an answer. Rose Marie believes "Divine Providence from God and His Guidance" kept her focused on her fight against this devastating disease.

Rose Marie has traveled to Portugal, the Azores and across the United States educating professionals and lay persons on the effects of Machado Joseph Disease.

In a volunteer position she has spent countless hours helping families world wide who have been affected by MJD.

Rose Marie Silva along with a wonderful group of volunteers founded the International Joseph Disease Foundation in 1977. The IJDF a nonprofit organization has been dedicated in educating and supporting individuals world wide who have been effected by Machado Joseph Disease. In the past the IJDF has sponsored many clinics so individuals could be tested and counseled on Machado Joseph Disease.

Rose Marie has many friends across the globe. One is Doctor Roger Rosenberg who was one of two Neurologists who discovered and identified Joseph Disease. He also is the holder of the Abe (Brunky) Morris and William Zale Distinguished Chair in Neurology. Dr.Rosenberg makes the following comment, "the medical community owes Rose Marie Silva a debt of gratitude." Rose Marie recalls how everything "just came about" one miracle after another!"

Rose Marie has such a determined spirit and caring attitude. She takes no credit herself but believes she has been "Divinely led every step of the way."

What is extraordinary about this story is that Machado Joseph Disease is well over 500 years old... maybe even thousands of years old! And in just "thirty years" MJD has been uncovered to be a genetic neurological disease that has been discovered world wide! Affecting hundreds of thousands of people.

In 1994 a DNA marker was found by researchers in Japan identifying the gene. Today research is global in finding a cure for this disease. It truly has been "Divine Guidance" for all concerned!

Rose Marie does not carry the MJD gene but she has had to face other tragedies in her life. The death of her only son Brian; and recently Rose Marie lost her right leg to cardio vascular disease. Amazingly Rose Marie does not give up hope "God still must have plans for me!" And I agree with her! I am some what prejudice as she is my Aunt but I have learned so much from her. She seeks after truth, always moving forward, and holds no bitterness to life's trials. Rose Marie is an example we can all learn from!

We love you Aunt Rose Marie. Thank you from the bottom of all of our hearts!

Muito Obrigada