Christopher Forbes – Director

Christopher Forbes is currently a Security Engineer at Altera Digital Health. He recently graduated from East Carolina University with a BS in Information Technology.

Chris’s personal journey with this rare disease began in June of 2022 when his father received an ALSP diagnosis. This event propelled him to undergo genetic testing, which ultimately led to his own diagnosis as a carrier of the same genetic mutation in November 2022.

Throughout this challenging journey, he witnessed firsthand the struggles faced by individuals living with, treating, and coping with rare diseases like ALSP. It is this firsthand experience that drives his passion to collaborate with patient advocacy groups, such as Sisters’ Hope Foundation and Every Life Foundation, to promote patient advocacy and raise awareness for all rare diseases.

Chris will lead the Regulatory Affairs Committee for Sisters’ Hope Foundation with an emphasis on collaborating with EveryLife Foundation through the Community Congress working groups.

If you have questions for Chris regarding Regulatory Affairs and Everylife Foundation, he can be contacted at