Care for the Genetic ALS & FTD Community
For our loved ones who have manifested full ALS and FTD and received a symptomatic diagnosis we appreciate the wonderful care on offer to them at many dedicated ALS and FTD clinical centers around the world and across the United States. At End the Legacy we have taken it as a mission to ensure the risk to our health from being in families with inherited ALS and FTD is acknowledged and addressed as part of our personal health profile even when asymptomatic as we desire it.
Care for a future health risk is most often vigilance that allows identification of disease at earlier stages. This would replace the standard method of ALS or FTD diagnosis in our families which is waiting for the patient or family to decide disease has started and then to seek medical care. See Michael's Story of how at risk care enabled an ALS diagnosis with full function still accessible:
We must insist that if you desire to pursue care for this risk you understand the implications of establishing this risk in your medical records. A genetic counselor is best qualified to provide that education - you can access a free genetic counseling education session through our program here, or through accessing counseling via research at the Prevent ALS study available at each of our recognized centers.
