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Sharing our story with the FDA

Sharing our story at the Annual ATS Conference

Show your support all year round!

The HPS “Lots of Dots Challenge” is an opportunity to raise awareness and funding in a fun symbolic way to advance our mission to cureHPS.  

The launch of this challenge took place on April 6th, HPS Awareness Day!  Including dots in your social media pictures is a simple and easy way to show your support for HPS. Your participation will raise awareness for HPS, which provides hope and opportunity. It gives a voice to those who may never be heard.

Why Dots?

It’s the DOTS…in our case, lack of dots that identify a person with Hermansky-Pudlak Syndrome (HPS). The first step in diagnosis is to analyze the prepared platelets under the electron microscope. A normal functioning platelet looks like a chocolate chip cookie; it has “dots”, these are the dense body granules that contain chemicals that are released when there is an injury. The chemicals help the platelets clump together to form a blood clot. An HPS platelet looks like a sugar cookie; it is missing the dense body granules; the “dots”, that allow the blood to clot properly. It is identifying the lack of dots that gives a definitive diagnosis of Hermansky-Pudlak Syndrome.

Curing this disease would correct the platelet defect and give us LOTS OF DOTS!! Therefore, we have adopted the DOTS as a symbol of significance within our HPS community and #cureHPS mission. We have designed our awareness ribbon to reflect this, a red ribbon with black dots. We use “dots” as part of our images, communication, and awareness.

How Can I Participate on Social Media?
  • Post a picture on social media showing off your dots for the mission #CureHPS 
  • Include the phrase: “My dots are making a difference” and Hashtags: #LotsofDots   #CureHPS
  • Copy and paste with your post: I participated in the “Lots of Dots” challenge!  My DOTS are making a difference; they are raising AWARENESS & FUNDING to CURE the Rare Disorder: HPS, that affects multiple systems in the body.  Please visit: HPSnetwork.org to find out what the DOTS represent, learn more about HPS, and Donate!!  Nominate and tag at least 3 friends to keep the challenge going!



How do I explain HPS and the HPS Network to others?

Hermansky-Pudlak Syndrome is a rare genetic metabolic disorder that affects multiple systems in the body. It is characterized by albinism, visual impairment, and a platelet dysfunction that results in prolonged bleeding. Many people with HPS will develop other complications including inflammatory bowel disease, pulmonary fibrosis, and kidney disease.

The HPS Network’s mission is to provide education and vital support programs to individuals and families with Hermansky-Pudlak Syndrome while striving for improved care and innovative research on our journey to cure. 

What if I'm not on Social Media?

You still can participate even if you don’t have social media!  

  • Send us a picture, we can post it for you.  
  • Tell your friends and family about the challenge.  Text them your picture!
  • Send friends and family to our website for more information and to donate.

All of this is raising awareness about HPS and our DOTS, which is the goal of this challenge.

Show the world that “These DOTS are making a difference”.  This new Lots of Dots apparel was designed to raise AWARENESS and FUNDING for the CureHPS mission!  All proceeds go directly to the HPS Network.  

Order now at:  Bonfire.com/lots-of-dots