January 2021

Happy New Year

What can I say…? Last year was filled with challenges, and while as a rare disease community and organization we are familiar with challenge, last year proved difficult for us all.  Looking back on 2020, I am so proud of the Association team for taking the opportunity to innovate and grow all throughout last year.  We acquired many new skills, found ways to adapt, and all the while continued to provide opportunities for all of you to connect and learn.  I am extremely proud of the histio community, for continuing to advocate for what you need and to stand strong against an unknown.  

Despite so much uncertainty, one thing remained true for us through all of 2020 – we had to figure out how to be there for each of you. 

Having been diagnosed with LCH (Langerhans Cell Histiocytosis) at the age of six and knowing how instrumental the Histiocytosis Association had been for me, I understand the importance of the things that make up our mission. The continuous education empowers us as patients, family members, and medical professionals, to understand the latest information about these rare conditions, and to get answers to all our questions.   Connection is equally important; I remember the feeling of being alone. With every opportunity to speak with a histio patient or parent or family member, however, that feeling is erased. The research we fund consists of the most promising projects that bring new light to areas of histiocytosis knowledge, treatment, or pathology, peeling back the corners of what was possible and shining light on better patient outcomes.  

So last year, as we shifted to working from home, we also adjusted our focus to what we could continue to provide the community virtually while maintaining our programs. 

  • We evolved our events to be virtual, and many of you joined us for the Histio Hike, the Camp Out for Histio, Histio Live on Giving Tuesday, Ty Fighters 5K, and several other amazing events. We learned from this experience and having virtual opportunities in the future will be something we continue to support.  
  • We hosted several Trivia Nights, sharing in a much-needed reprieve and connecting with one another in a new way! 
  • We hosted over 5 educational webinars in place of in-person regional meetings, which showed us the power and impact of their wide reach and allowed us to explore new topics.  
  • We actively partnered with other family groups around the world to host webinars, develop additional resources, and to share a message of solidarity as we stand together today and every day for each other in support of you! 
  • We participated in Rare Disease Week and lobbied to our New Jersey state senator and representative, as well as petitioned for several important bills, including the STAT Act which would develop a Rare Disease Center of Excellence within the Food and Drug Administration (FDA) to help improve opportunities for clinical trials and treatment development for rare diseases.   
  • And we worked behind the scenes with many of you to review the current website, identify what more you needed it to provide, and made many changes to improve your access to resources, information, physicians’ contact information, and more. Knowing that most people find information about their diagnosis online, we want to ensure we are continuing to provide as much support as we can, and that the information is easy to access, and up to date. We are still working on further improvements and are excited with the changes we have made, thus far.  

The Histiocytosis Association’s mission is to support those affected by histiocytic disorders, by providing educational opportunities, improved access to critical resources, emotional support, raising awareness advocating for policy reform, and most importantly, raising funds for research into better treatments, targeted therapies, and advancements in the knowledge of the diseases to ensure early diagnosis and improved chances of survival. Our programs are critical to our mission, so we are laser focused this year on ensuring those programs thrive and grow.   

What are some of your most favorite memories from 2020?  How did the pandemic change you for the better?  

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