May 2021

mountain view

I hit the road in early May, the wind in my hair as I drove my Mini Cooper down the highway, westbound and headed out for our first in-person events since 2020! The excitement was palpable; after over a year of staying safe at home, the world finally felt as if it were opening.  We had decided to make Histio Awareness masks, and of course ensured that we would take all precautions needed to keep the community safe.  

The first stop on the schedule was Dallas, Texas. The Association had welcomed a partnership with Events 360 to participate in the 5x5K For Good, which was a series of 5K races located throughout the greater Dallas area, and offered charity partners such as Leukemia Texas, the Preeclampsia Foundation, and of course, the Histiocytosis Association, an opportunity for awareness of our organizations and missions.  I ran 4 of the 5 races, having decided before arrival that I wanted to ideally use the extra time to connect with anyone I could in the area.  I felt so fortunate to be able to meet with several histio families, and to learn more about their histio journey as well as thank them for the support they have given the Association throughout the years.  It was a very memorable experience, and one we hope to be able to do again.  

The next stop was Mannford, Oklahoma, where the White family and their amazing community, came together for the 11th annual Run for Jeffrey White.  You can read Jeffrey’s story and battle with HLH, here.  The amazing event not only brought together the local community in support of Jeffrey and the Association, it also was noticed by two other families who were both impacted by histiocytosis and have been able to find comfort and connection with one another for several years!  You can read more about Abby’s experience with LCH, here, and Caleb’s journey with HLH, here.  I cannot put into words how much it meant for me to be able to meet these families, and I look forward to participating in this event next year! 

In Texarkana, Arkansas, I had the honor to sit down with Jessica Corkran, Executive Director of the ECD Global Alliance, and Kathleen Brewer, the ECDGA’s President. Throughout the pandemic, our organizations partnered on many virtual webinars and events, and spent some time discussing additional ways we can work together to drive progress for research, resources, and support.  To be in the company of such passionate and caring leaders was a tremendous opportunity and I am so grateful for all that they do in support of patients impacted by Erdheim-Chester Disease.  

The final stop before heading back to Pitman, New Jersey, was to St. Jude’s Children’s Hospital in Memphis, Tennessee. Here I met with Dr. Carlos Galindo-Rodriguez and Sara Clyburn, who support the North American Consoritum for Histiocytosis (NACHO) and lead over 60 institutions in clinical trials for histiocytic disorders. You can learn more about their work and available research on their website; we have partnered together in previous years and are grateful for the advancements they have helped realize for treatment, diagnosis, and improvement of patient outcomes.  

While I was sad to see the trip end, it was the very first of trips and in-person conversations for 2021 and I am comforted knowing there are many more to come. I look forward to updating you on the next steps and evolutions of these partnerships, and the impact they will have on histiocytic disorders.

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