April 2021

Our fundraising events are incredibly special.  While they do seek to bring together the community to raise funds for research and other important programs the Association runs, the emphasis at these events is on bringing together the community.  I have had the honor of attending many of our events, as a patient, a Board Trustee, and these past months as Executive Director.  I am continuously blown away by the outpouring of support and love that is felt and seen at these events.   

For over 7 years, April has held two very important events: the Walk in Memory of Robert Johnson in New Jersey, and the Histio Hike Shenandoah in Shenandoah National Park, Virginia.   Both events bring nearly 50-100 families together to participate in an activity, to share memories of and experiences with histiocytosis, and raise funds that drive forward progress in research through grants, scholarships, educational opportunities including talks with physicians and care bags for newly diagnosed patients, and more.  

If you have not yet joined us at an event, we encourage you to join us next year in April or check out our calendar of upcoming events for one that may be located near you.  The Histio Hike Shenandoah also includes a Listen and Learn, where a physician speaks on the latest advancement of histiocytic research, and answers questions from families.  Both events foster opportunity to histio patients, parents, siblings, and other family members, to connect.   

Since 2010, the Histio Hike Shenandoah has raised $732,285, and the last two years, have awarded 10% of the total amount raised to fund a college scholarship for a histio warrior!  Since 2012, the Walk in Memory of Robert Johnson raised $76,850! For context, the cost of a single research grant is $50,000, so both events have helped to fund over 14 research grants! Even more importantly, are the stories of these families. You can read Robert Johnson’s story of bravery in his fight against HLH, here.  Ian Brown’s 5-year battle against LCH, and the reason why the Brown family hikes every year, can be read, here. Histio Warriors are amazing, standing tall against these terrible diseases.  We stand beside each one of these warriors and each of you as their family, caregivers, and clinicians, in our own fight to cure histiocytic disorders.  Thank you to all who support us, and for the opportunity to meet you all during these events.  

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