Tuesday, April 6th is HPS Awareness Day!
Starting in 2019, the HPS Network designated April 6th as HPS Awareness Day. Why April 6th? That is the HPS Network’s birthday, as we were incorporated as a 501c3 on. April 6, 1995. What is HPS Awareness Day? It is our one day in the year to recognize and spread awareness regarding Hermansky-Pudlak syndrome. We encourage our members to share what HPS is, their family’s experience with HPS, and to fundraise for a cure.
How can you be a part of this great day? In previous years, our members have hosted movie nights, dinners, Just Dance parties, and Facebook fundraisers. This year we have the new tool, Donorview, which allows members to set up their own personal fundraising pages that can be shared on social media, text, and email.
You can GET STARTED TODAY!
What is that spotted ribbon? In 2019, we also unveiled our awareness ribbon, red with black polka dots. The dots represent the dense granules on the platelets that help with clotting. They are what we hope to have when we find a treatment.
On HPS Awareness Day we encourage our members and their supporters to wear polka dots and the colors red and black. This year we will hold a virtual celebration with our members, family and friends on Gatherly.
Stay tuned to details! Email firstname.lastname@example.org for information regarding our games night on Gatherly on HPS Awareness Day and to set up your own fundraising page.