Executive Director's Letters

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!

Deanna

Email: deannafournier@histio.org
Phone: (856) 589-6606
Click Here for Other Ways to Connect

Rare Disease Advisory Panel – PCORI Fall Meetings

November 2, 2023 Comments Off on Rare Disease Advisory Panel – PCORI Fall Meetings
Deanna pictured at PCORI Rare Disease Advisory Panel Meeting

The Patient Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. They…

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A Peak Through the Clouds: NORD Breakthrough Summit

October 19, 2023 Comments Off on A Peak Through the Clouds: NORD Breakthrough Summit

I was so excited to attend the NORD Breakthrough Summit, where patient advocacy professionals, pharmaceutical companies, biotech, FDA, and other key stakeholders in rare disease come together to learn and…

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Histio Letter Writing Campaign: A Remarkable Success!

October 5, 2023 Comments Off on Histio Letter Writing Campaign: A Remarkable Success!

Welcome back to the blog! After a month off while we took more time to bring awareness to histio, we are back and ready to tell you all about what…

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Access to Therapy Around the World

August 3, 2023 Comments Off on Access to Therapy Around the World

As you know, the Histiocytosis Association has a multifaceted mission and under that umbrella, oversees many different activities all aimed at providing support, resources, and advocacy along every step of…

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Home run and a Hole in One for a Cure

July 20, 2023 Comments Off on Home run and a Hole in One for a Cure

Back in June, we had two events that both centered around supporting HLH and both involving sports. The first, ‘Play for a Cure’, is a 25-Year-Old event and the second…

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