Hermansky-Pudlak Syndrome Network Inc

Gina Danzinger, an organizational development consultant, volunteered her experience during the Sunday lunch at the 17th annual HPS New York Family Conference to run a group activity that challenged each table to create a list of what they could do to support the HPS Network and help to work for the cure.

The HPS Network isn’t just run by the office. Its work cannot continue without an active membership. Below is a list of member-generated suggestions on how anyone can play a greater part in the HPS Network and its mission.

Organize an HPS picnic in my area
Hold an HPS fundraiser in my town
Use social networking tools to spread awareness of HPS
Ask for donations at work
Contact my local media when there’s an HPS-related news hook
Contact medical schools in my area and try to find ways to present information about HPS to the students
Give the “Presentation in a Bag” presentation in my community
Participate in existing HPS Network fundraisers
Share my talents with the HPS Network in Puerto Rico
Join one of the HPS listservs
Read the HPS Network Website regularly so I’m informed about the latest news
Facilitate ongoing communication among the kids with HPS throughout the year