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!
One of the ways we can propel progress is through advocacy. It seems impossible, to be able to sit with legislatures and policy makers, and to drive forward new processes and…Read More
The National Organization for Rare Disorders (NORD) is an incredible group of individuals, dedicated to support the needs of patients, families, and organizations impacted by rare diseases and conditions. Last year, we…Read More