On Unexpected Career Changes and Innovative Change-Makers in Rare Disease

Friends and colleagues, I will be taking a health sabbatical this summer and have made the difficult decision to step down as the CEO of the Erdheim-Chester Disease Global Alliance.

Call me superstitious, but I wonder if I accidentally fell victim to an ancient voodoo curse after moving to Louisiana last October. In the past four months, a number of unlucky health incidents have popped up, including catching COVID-19 in Baltimore (the same week the bridge collapsed) and sustaining a concussion after a run-in with a particularly fierce bicyclist in Seattle. Like many of my colleagues in patient advocacy, I also manage my own chronic health conditions which have only been amplified by this series of unlucky events.

That's a long way of saying that I will be taking a health sabbatical this summer, and I encourage you to light candles and send me sage sticks (or good vibes) as I recover.

The ECD Global Alliance, and its leadership have been incredibly accommodating and gracious during this entire process. So before I go, I'd like to make sure you know who they are - because if you're doing anything in #oncology, #raredisease, or #histiocytosis, you should know about the Erdheim-Chester Disease Global Alliance.

How a Small, South Louisiana Nonprofit is Changing the Nature of Rare Blood Cancer

If you don't know them, the ECD Global Alliance is headquartered in a one-room office in southwest Louisiana and powered almost entirely by volunteers. It's also funded almost entirely by individual donations—typically unheard of in the rare disease nonprofit world.

Erdheim-Chester disease itself is a rare histiocytic neoplasm, a form of blood cancer that affects less than 2,000 people in the world that we know of and its multisystem nature makes treating the disease particularly challenging.

Yet, despite sparse resources and an ultra-rare patient population, this humble organization has achieved amazing things that rival the accomplishments of much bigger and better-resourced organizations. Here are just a few milestones that stand out:

1. The development of Consensus Recommendations for the Evaluation, Diagnosis, and Treatment of Erdheim-Chester disease (2020), compiled from real-world practice, insights from people with ECD and their families, and our network of physicians from around the globe.
2. Inclusion of ECD in the National Comprehensive Cancer Network (NCCN) Guidelines for Histiocytosis which helps to improve the clinical practice of cancer centers treating people with ECD.
3. Regulatory approval in the United States for two new therapies to treat ECD to improve the life and longevity of people with ECD.
4. Opportunities for “citizen scientists” to join in research through the ECD Patient Registry, hosted in partnership with the Memorial Sloan Kettering Cancer Center.
5. Development of a multi-nation ECD Care Center Referral Network, with 40 centers of ECD-knowledgeable professionals worldwide available for consultation.
6. Ongoing investments in new ECD research, totaling more than $1.2 million, which have provided funding for now-FDA-approved therapies and early career researchers
7. Personalized support for over 1,500 people with ECD and their families through educational webinars, peer chats, and patient navigation.
8. Nearly 10 years of in-person, peer learning events including the annual Patient & Family Gathering and the Medical Symposium, allowing for real-time dialogue between medical professionals, scientists, and the people and families they support.

The heart and soul of the ECD Community - researchers, clinicians, people living with ECD and their family and caregivers - have changed the trajectory of an Erdheim-Chester diagnosis for generations to come. These milestones add up in important ways -- perhaps most impressively, in scientific progress that can greatly improve the quality of life and longevity of someone diagnosed with ECD.

The Importance of Good Leadership

Part of what makes the ECD Global Alliance tick is leadership who are personally invested in improving the lives of people with ECD and their families. The Board of Directors counts among its roster: people who are living with ECD today, people who care for a loved one with ECD, and clinicians who have dedicated a substantial portion of their career to helping to find a cure. That personal connection translates directly into strong leadership.

I'm especially honored to have had the chance to work with this incredible group of people:

• Kathy Brewer , Founder, President, and a fearless woman entrepreneur and engineer by background, who launched this organization to create better support for people with ECD after her husband died from ECD (only diagnosed during autopsy)
• Diane Schriner , Vice President, who cares for her husband Scott and volunteers countless hours each year doing everything from accounting and financial support to recruiting medical professionals to learn more about ECD at medical specialty conferences
• Ishtiaq C. , Treasurer, who provides financial management and support to the organization based on his business expertise in finance and who lives with ECD, serving as a patient advocate for those in our community
• Janet Froetscher , Secretary, whose extensive nonprofit leadership background and personal family connection to ECD offer her strategic insights into how to continue the momentum of the organization as it looks ahead to the future
• Juvianee Ibrahim ESTRADA-VERAS , MD, the research scientist who led the charge at the National Institutes of Health to begin a natural history study on ECD and who continues to advocate for more research to better under the disease and how to help people living with it
• Paul Hendrie , MD, PhD, who leads the ECD Care Center at the Fred Hutch Cancer Center in Seattle, WA, and balances his volunteer responsibilities as Chair of the Research Committee (among others) with ongoing clinical practice and research
• David?Smythe, from Australia, who brings an international perspective and his background in investment and financial banking, and who, as someone living with ECD, helped facilitate new support chats for people with ECD in Australia and New Zealand
• Joe Fleishhacker, who also brings his extensive background in the medical device and healthcare industry, and who offers insights based on his personal experience of living with ECD in addition to systems-level thinking.

Beyond our Board of Directors, a whole army of medical professionals, scientists, clinicians and researchers have become ambassadors for ECD, including Eli Diamond at Memorial Sloan Kettering Cancer-Center, Gaurav Goyal at University of Alabama at Birmingham , Ron Go at the Mayo Clinic , early career researchers and clinicians such as Jithma Abeykoon and Aishwarya Ravindran , international leaders such as Oshrat Rokah , among many, many others who give their time, expertise, and insight to this work.

I could go on and on -- just to say that it's important to have people who are bought into the mission and who are good, kind, and caring people. That's something unique to the ECD Global Alliance that offers a model for other rare disease organizations to follow.

I'll also miss working with Belinda Cobb, Patient Navigator, and Renita Page. They share that south Louisiana “joie de vivre” with a compassionate, kind approach that is so meaningful to people who are living with this disease every day and grieving its impact. I have learned much from them in the past six months.

On Self-Care When You're Busy Caring for Others

As anyone working in patient advocacy will tell you, a moment of health crisis can be a bit of a divining rod. It can force you to stop and care for yourself if you haven’t paid attention in a while. For many of us working in the non-profit sector, work is all-consuming, defining, and a core piece of our identity. We make meaning and find purpose in being able to help others and in finding new and creative ways to bring a little light to the world.

Occasionally, we forget that we also need care and healing. If we ignore that nagging reminder long enough, the universe will send us sharp reminders that we're not immortal (yet). As much as work can be a place where we do good in the world, it is also okay to set work aside to bring balance back to our lives.

For me, I keep coming back to a meditation from the author C.S. Lewis,

“I am progressing along the path of life in my ordinary contentedly fallen and godless condition, absorbed in a merry meeting with my friends for the morrow or a bit of work that tickles my vanity today, a holiday or a new book, when suddenly a stab of abdominal pain that threatens serious disease, or a headline in the newspapers that threatens us all with destruction, sends this whole pack of cards tumbling down. At first I am overwhelmed, and all my little happinesses look like broken toys. Then, slowly and reluctantly, bit by bit, I try to bring myself into the frame of mind that I should be in at all times. I remind myself that all these toys were never intended to possess my heart, that my true good is in another world, and my only real treasure is Christ.”

Stay tuned.

C. Grace Juneau Whiting, J.D., is a nonprofit executive with subject-matter expertise in patient advocacy, family caregiving, and long-term care. Based in Baton Rouge, Louisiana, Grace lives with her brilliant hubby Geoff Whiting and their delightfully talkative tortoiseshell cat, Baby.