Executive Director's Letters
Welcome To The Blog!
I will never forget my experience with LCH, as I am sure is true for so many histiocytosis patients, families, and friends. I can still remember what it felt like to hear a diagnosis of a rare disease, the visits to the hospital, the pain, the uncertainty, the heroes on my medical team – it is all vivid as though it were only a week ago. One of the most important pieces of recovery for me, was the opportunity to connect with other families and patients; to hear their stories and learn from their experience. The world of rare disease can feel lonely, and it is often hard to talk about what we have seen, felt, and been through. Even if we meet someone who has suffered from a rare or debilitating condition, their journey may have been very different from our own. Years ago, we did not have the technology we do today to email one another or to connect on social media. We connected through a PenPal club, finding comfort in the words of others, pressed into the lined paper or edges of notebooks and sent via mail to the eager eyes of a fellow Histio Warrior or family member. I still have so many letters from the PenPal club. They are tucked away in a special box in my house and are a memory I treasure. I admit, I revisit those words and stories often.
Now, everything has become digital. And the benefit of that is the far-reaching edges of the world that we can all now touch. So, this blog, along with the Beyond the Diagnosis Podcast, our regional/local meetings, and any community engagements we can facilitate, are our way of connecting with you. I invite you to come along with the Association Team as we share our work, share stories of warriors and families, and bring you deeper into the impact you all have on us. I encourage you to comment, share, and to bring new ideas forward to me; know that while these are just my thoughts down on paper, they are meant for each one of you, to be a source of connection and to talk about the topics most important to you.
I look forward to these posts and look forward to hearing what you would like to hear!
This is part 2 of our series recapping the events of the 38th Annual Histiocyte Society meeting. Click here for part 1. Every 3 years there is a passing of…Read More
On September 17th, the Board of the Histiocyte Society gathered in Karolinska Institute in Stockholm, Sweden to kick off the 38th Annual Meeting of the Histiocyte Society, which continued on for the next three days. Being in my mid-thirties, it is inspiring and humbling that for my entire life, there has been an international effort toward advancing knowledge about histiocytic disorders and improving outcomes for patients through the planning, development, sponsorship and oversight of clinical research.Read More
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As I mentioned in part one of our two part series on Advocacy, the role of advocacy in rare disease helps to ensure that policymakers and legislators know about challenges…Read More
Histiocytic disorders make up about six of the 7,000 rare diseases that exist today. When a condition is rare, it is unlikely that there will be federal funding to support…Read More