As we return home from the Rare Disease Day Fireside Chat Panel Meet & Greet, our hearts are filled with inspiration and gratitude. It was an honor for members of the board to attend this impactful event, uniting specialists, healthcare industry leaders, and RARE families in a shared mission. The discussions were illuminating, delving into crucial topics such as insurance, advocacy, and policy. We witnessed firsthand the power of connection and collaboration, as voices were raised and insights shared. It's moments like these that remind us of the resilience and strength within the rare disease community. As we reflect on the day's conversations and connections made, we're more determined than ever to continue advocating for greater awareness, support, and progress. Together, we can drive positive change and make a difference for those affected by rare diseases.
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Eric and his wife Amanda Majusiak attended NJ Rare Disease Day along with RD the Rare Disease Dragon. RD was excited to make his first public appearance with the Rare Action Network. Attendees were able to take information about Eric's Journey Foundation and their programs - along with some super cool RD the Rare Disease Dragon stickers and pins! It was a fun night for all! This years NJ Rare Disease Day was hosted by NORD Rare Action Network Ambassador Patricia Guerds at the Make-A-Wish Castle, The Samuel & Josephine Plumeri Wishing Place located in Perrineville, NJ. The goal with the State Resource Fair is to empower patients and families with helpful information, community organizations, and service near where they live to ease their burdens. Often individuals with rare diseases must travel great, costly distances to find care or experts familiar with their condition; very few treatments exist, and it can feel very isolating to have a serious medical condition that most misunderstand. The event will also serve as an opportunity for people to find hope and connect with one another.
Eric's Journey Foundation celebrates Rare Disease Day with the NORD NJ Rare Action Network. President Eric Majusiak will make an appearance with RD, the Rare Disease Dragon.  One of the greatest challenges individuals living with a rare disease, their families, and patient advocates have is finding and accessing information and resources to help them advocate for themselves and their loved ones, as well as to raise awareness of issues facing others in the community. To help alleviate these daily burdens and ensure individuals and advocates can navigate local and state-based resources, we will be hosting a State Resource Fair for the rare disease community to coincide with Rare Disease Day. There is no cost to participants to attend this event. NORD New Jersey Rare Action Network Rare Disease Day Tuesday, February 28, 2023 from 5:00 pm – 8:00 pm Make-A-Wish Castle, The Samuel & Josephine Plumeri Wishing Place 1384 Perrineville Road, Monroe Township, NJ 08831 For More Information Contact the Organizer
Please help me in my goal to support the construction of Phase 3 of the Zakithi Nkosi Haematology Centre of Excellence in Soweto, South Africa
This is a world class facility, under the direction of Mrs. Daphne Mashile-Nkosi, located at the Chris Hani Baragwanath Academic Hospital, with specific focus on servicing patients who suffer from HLH and other critical blood disorders. Together we can make a immense impact around the world for generations to come. Let us honor Zaza and her desire to raise awareness and be a light in the world. EJF President, Eric Majusiak, donates "RD" painting to Haematology Centre - Soweto, South Africa6/15/2022  Zakithi Nkosi Paediatric Haematology and Oncology Clinic President Eric Majusiak pictured with Mrs. Daphne Mashile Nkosi - This painting of RD the Rare Disease Dragon and the puppet will be on display at the hospital in the waiting area for the paediatric patients. The background of the RD painting matches the under the sea theme in the treatment rooms.  Eric and Dane Escaping Reality Who: Dane Dougherty Age: 26 Rare Disease: Hereditary Multiple Osteochondromas What it is: Where bone tumors grow around the growth plate and around the joints. These growths are often spike shaped. What Is Your Story? “I just had my 57th surgery.” Due to Dane’s rare disease, he often must have surgery to remove spikes that have grown around his joints. Dane has had much of his life impacted by having a rare disease. By the time Dane Dougherty turned 18, he already had 40 surgeries. “Growing up, I spent most of my time in the hospital.” Dane continued by saying that because of all his surgeries, he didn’t always know how to interact with people because he wasn’t able to attend school and had to complete most of his education at home, or in the hospital. How Has Hereditary Multiple Osteochondromas Affected Your Quality Of Life? “The pain is pretty much constant because. . . spikes.” Dane has to take a lot of medications. “A lot of the time, because of the medications, I am just not really there.” Dane continues by saying that his memory is often fuzzy. There is no cure for Hereditary Multiple Osteochondromas. The medicine prescribed just helps the pain and the inflammation. According to the National Organization for Rare Disorders, “1 out of 50,000 people suffer from Hereditary Multiple Osteochondromas." What Is The Biggest Impact HMO Has Had On Your Health? Dane recalls one of the worst spots that a spur grew “I had a spur that joined my tibia to my fibula, I had one on my ribs. I had to have part of one of my ribs removed because one of the spikes was puncturing my lung.” If the spikes get too big or they break, they can become cancerous. Dane also survived Lymphoma after having been diagnosed at nine years old. How Has Your Invisible Disability Impacted Your Social Life? “I look like a normal guy, but I can’t do simple things like tie my own shoes.” Dane says that making and keeping friends is hard because of his disease. “I have even had friends turn to bullies.” Dane said he has had friends who stopped being his friend after they found out about his illness. How Has EJF Impacted Your Life? Dane says that he can’t say much about the impact EJF has had on his life because this is his first experience with Eric’s Journey Foundation, but he appreciates being given the opportunity to be able to tell his story. EJF was able to provide Dane with a small token of financial support to increase Dane's access to gaming and gaming materials. “Meeting Eric has been a great experience. Eric is probably one of my favorite people to play Dungeons and Dragons with, hands down. Eric is a great person. Playing with him has been one of the better experiences in my life.  Eric’s Journey Foundation is pleased to announce that we have recently been granted a federal 501(c)(3) tax-exempt nonprofit status. EJF had been working towards 501(c)(3) status for over a year, but due to COVID19, this process took longer than expected.
The founder of EJF, Eric Majusiak started a blog titled Eric’s Journey in 2012. The blog started out as a place where Eric detailed his experience after a ninety-nine-day hospital stay where he battled a cytokine storm caused by Hemophagocytic lymphohistiocytosis (HLH). Over the years, the blog grew to be much more than just a blog. It has become a place people come for information and support. In 2019, Eric’s Journey Foundation was founded. EJF is dedicated to raising awareness for Still's Disease, HLH, other histiocytic disorders and all rare diseases. After acquiring 501(c)(3) status, EJF is now recognized on GuideStar, the world’s largest source of nonprofit information. This website provides information on the validity and financial efficacy of nonprofit organizations. EJF is listed on GuideStar to provide transparency for donors, prospective donors and recipients of the foundation. People can now follow EJF on Facebook as a recognized 501(c)(3) nonprofit foundation. Eric's Journey Foundation is also excited to announce that EJF is now on Amazon Smile. Amazon Smile will donate 0.5% of eligible purchases on Amazon to Eric's Journey Foundation, which will further the ability of EJF to spread awareness and continue providing support to patients and family members of those living with rare diseases. EJF is dedicated to raising awareness for all rare diseases, as well as focusing on mental health and patient advocacy. EJF intends to use the newly acquired 501(c)(3) status to further these goals and hopefully widen EJF’s outreach. To be sure that you don’t miss anything, join the EJF mailing list to learn about upcoming events, and become a community participant through the website. Check out Eric's Journey Foundation on: Amazon Smile https://smile.amazon.com/ch/84-3227676 If you are already supporting a charity and want to change it to EJF, go to the supporting tab, select change charity and search for Eric's Journey Foundation and click on select. If you are making a new Amazon Smile account, just follow the prompts to search and select Eric's Journey Foundation as the nonprofit you want to support when you create your Amazon Smile Account. Facebook Fundraising https://www.facebook.com/fund/EricsJourneyFoundation/ Guidestar https://www.guidestar.org/profile/84-3227676 
This year EJF President Eric Majusiak and his wife Amanda attended the NJ Rare Action Network New Jersey Rare Disease Day Event virtually on March 4th to work to educate our lawmakers on the importance of advocating for public policies that support the rare disease community.
The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside our sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients' lives. During the virtual Rare Disease Day event, they explored how the formation of a Rare Disease Advisory Council (RDAC) could help address the needs of those living with a rare disease in New Jersey. An RDAC is an advisory body made up of a diverse set of stakeholders that gives the rare disease community a stronger voice in state government. The creation of an RDAC would provide the rare disease community with an opportunity to make formal recommendations about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments, and cures. Rare Disease Day looked a little different this year with everything being virtual. Last year I had the opportunity to travel up to Trenton with my wife. This year we all hopped on a zoom call and I was able to speak on some of the personal struggles I face and connect with others on the work that Eric's Journey Foundation plans to do as our 501(c)(3) status takes effect later this year. PS. Eric also was selected as a winner of some awesome NORD swag for participating in this years event. 
Learn More About Rare Disease Day at: RareDiseaseDay.org
Meet six heroes from six continents all living with a rare disease
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The content on this site is for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult your physician to obtain personal healthcare and treatment options.
The content on this site is for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult your physician to obtain personal healthcare and treatment options.