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Newly Opened Foundation Aims to Raise Awareness for Adults with HLH & Other Rare Disorders

MULLICA HILL, NEW JERSEY, USA, March 2, 2020 / -- Eric’s Journey Foundation is pleased to announce their incorporation as a nonprofit organization in the State of New Jersey on November 13, 2019. For the past 8 years Eric Majusiak has made it his mission to raise awareness about HLH, Still’s Disease and other rare disorders, and now he has made the next step by opening his own Foundation that aims to raise awareness for individuals suffering from HLH-(Hemophagocytic lymphohistiocytosis), a rare disease that targets the immune system. Most recently HLH was in the news because it was linked to the death of 34 year old ESPN reporter Edward Aschoff according to multiple news networks including ABC News reporter Eden David. Eric’s Journey also aims to raise awareness for other rare diseases and autoinflammatory disorders.

“If I could just help one person...'' Eric recalled saying from his hospital bed nearly 8 years ago. Following the 99 day hospital stay, Eric dedicated his life to spreading awareness about adults diagnosed with HLH and other rare disorders.

After returning home from Temple Hospital in August of 2012, Eric started and it has grown into something they never imagined - often providing support to families through means of social media and video chats.

Twenty-seven year old Eric had a sore throat and was in immense joint pain. After stumbling to get up, his wife Amanda took him to a local hospital in New Jersey. After a week had gone by, Eric’s wife Amanda knew something wasn’t right when the nurse said, “We’re keeping him comfortable...”

The next day Eric was airlifted to Temple Health in Philadelphia where he was placed on ECMO (extracorporeal membrane oxygenation) as life saving measures because his lungs were failing.

Upon waking up, Eric learned he was diagnosed with two rare diseases HLH (Hemophagocytic lymphohistiocytosis) a rare disorder of the immune system and Adult-onset Still's Disease, an auto-inflammatory arthritis that can also attack your organs. After surviving the disease, Eric spent months recovering which involved learning how to breath, eat, walk and talk all over again.

Eric is dedicated to spreading the word, teaching people and raising awareness about rare diseases and specifically HLH. His efforts to educate people have included speaking at the ribbon cutting ceremony for the Zakithi Nkosi Clinical Hematology Centre of Excellence in South Africa- a center with a mission to treat HLH and other rare blood diseases. The center was named after Zakithi “Zaza” Nkosi who died from HLH at the age of nineteen. Eric has also spoken at Rutgers Robert Wood Johnson Medical School in hopes to educate med students about invisible illnesses.

Eric’s personal battle with HLH inspired him to start the foundation and dedicate his life to raising awareness.

Eric hopes his story will continue to reach people all over the world. His foundation aims to:

*Raise awareness for HLH and other rare disorders

*Increase speed of diagnosis

*Continue to support other Histiocytosis and rare disease organizations programs like Dynamite the Histio Warrior Dragon

*Provide travel stipends for doctors to attend the Histiocyte Society Annual Meeting to learn more about HLH and other Histiocytic Disorders.

*Build awareness about invisible illnesses and the fact that young people can be sick too

Eric’s Journey Foundation plans to extend beyond the diagnosis aiming to bring awareness for adults both medically and emotionally. Eric said that one of the reasons he started his own foundations is because “We all have something to learn from one another. Together we can make a difference for those affected by rare and chronic conditions.” He hopes others will join him in his efforts to fund awareness and bring joy to others.

About Eric’s Journey Foundation Inc:
The mission of Eric's Journey Foundation is to lead, inspire and support individuals around the world impacted by rare diseases.

For more information on Eric’s Journey Foundation, please visit

Eric Majusiak
Eric's Journey Foundation
+1 856-264-7584
email us here
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