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

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, SJIA 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 auto-inflammatory disorders. ​

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

If I could just help one person...

If I could just help one person...he recalls 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. That August he and his wife Amanda started EricsJourney.org and it has grown into something they never imagined - often providing support to families through means of social media and video chats. 

In 2012, 27 year old Eric Majusiak had a sore throat and was in immense pain. After stumbling to get up, his wife Amanda took him to a local hospital in New Jersey… assuming he had a bad case of the flu and just needed fluids. A week had gone by and she knew something wasn’t right when the nurse said, “We’re keeping him comfortable...” ​

The next day Eric was heli-vaced to Temple Health in Philadelphia where was placed on ECMO (extracorporeal membrane oxygenation) as a life saving measure while doctors struggled to find the cause of pneumonia - his lungs were failing.

Upon waking up, Eric learned he was diagnosed with not 1, but 2 rare diseases -  Hemophagocytic lymphohistiocytosis (HLH), a rare disorder of the immune system and adult onset Still's Disease, an auto-inflammatory arthritis that can also attack your organs. The treatment for this disease is chemotherapy. Due to the severity of these two diagnosis Eric was on chemotherapy and other medications in an effort to save his life. After surviving the disease  Majusiak spent months recovering which involves learning how to breath, eat, walk and talk all over again. ​​

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​Eric is dedicated to spreading the word, teaching people and raising awareness  about rare diseases and specifically HLH. Earlier in 2019, he and his wife Amanda embarked on a trip half-way around the world to South Africa. They spoke to a crowd of families, doctors and officials about Eric’s Journey at the ribbon cutting ceremony for the Zakithi Nkosi Clinical Hematology Centre of Excellence, a center given its name and mission to treat HLH and other blood disorders after 19 year old Zakithi “Zaza” Nkosi succumbed to the disease.

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In November, Eric returned to Rutgers Robert Wood Johnson Medical School to speak to first year med students about his medical journey and how his invisible illness and needs may not be so obvious to others. He hopes to establish a local partnership with his alma mater, Rowan University, to encourage med students there to think openly about patients who may suffer from symptoms of sudden or chronic auto-inflammatory conditions. These are just a few examples of things Eric has done to help raise awareness and he his goal by starting this foundation is to do even more to raise awareness and make diagnosis of patients with HLH and rare diseases easier

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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 not only medically, but 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 bring joy to others and funding awareness efforts.

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​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. 

Eric's Journey Foundation is a non-profit corporation in the State of New Jersey. Contributions to Eric’s Journey Foundation will be tax deductible, assuming receipt of a tax-exempt determination from the Internal Revenue Service.The foundation plans to file an application to obtain formal recognition of its status as a tax-exempt organization under section 501(c)(3) of the Internal Revenue Code in 2020.

For more information on Eric’s Journey Foundation, please visit www.EricsJourney.org 

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