Rare Leader: Kathleen Brewer, President, Erdheim-Chester Disease Global Alliance

The Basics
Name: Kathleen Brewer

Title: President

Organization: Erdheim-Chester Disease Global Alliance

Social Media Links:

Disease focus: The organization focuses on Erdheim-Chester disease and adult histiocytosis. Erdheim-Chester disease is an extremely rare disorder that can affect many different organs of the body. It is characterized by excessive production and accumulation of specific cells, the normal function of which is to fight infections. These cells, which are called histiocytes, infiltrate the loose connective tissue of the body. As a result, this tissue becomes thickened, dense, and fibrotic. Unless successful treatment is found, organ failure can result.

Headquarters: DeRidder, Louisiana

How did you become involved in rare disease: My husband passed away in 2007. After years of suffering and declining health he remained undiagnosed, in spite of having a complete medical work-up at three major, highly respected teaching hospitals in the United States. At his passing, an autopsy was performed. The autopsy report identified ECD lesions throughout his body.

Previous career: I’m a mechanical engineer by training. Upon graduation, I began my career as a CAD/CAM application software engineer at The Boeing Company and then went into management. I left that position and moved back to Louisiana when my husband and I fell in love. After my husband passed away, I worked with my business partner to create an environmental contracting company. At the same time, I volunteered my time to create the ECD Global Alliance to help other ECD patients avoid the issues that my husband had to face. I am now easing into retirement with my paying job winding down.

Education: BS in mechanical engineering; masters in engineering from Louisiana State University

The Organization
Organization’s mission: Our mission is to raise awareness of ECD, provide support to those affected by the disease, and advocate for and support research programs. We also share educational material and facilitate information sharing among interested parties regarding ECD.

Organization’s strategy: The ECDGA has always strived to bring patients, families, and medical professionals together to collaborate for the good of all. The organization found that by regularly bringing interested physicians together to share knowledge, and then inviting patients in to learn and share their experiences, progress occurred. It is through this collaboration that an international ECD Care Center Referral Network was created, an ECD natural history study was begun at the National Institutes of Health, an ECD patient registry was developed at Memorial Sloan Kettering, and an ECD treatment gained FDA approval, all within the first 10 years of the organization’s existence. The ECDGA continues work to educate medical personnel in an effort to dramatically improve the timeliness of ECD diagnoses. We also work to help empower and strengthen a community of informed and connected patients, caregivers and physicians. By doing this we act to enhance collaborative research with a patient-centered approach. A documented strategic plan has been developed in collaboration with the ECDGA Board of Directors, staff members, medical professionals, and representatives of the patients and families supported by the organization.

Funding strategy: As a grassroots organization, we have historically depended on donations from individuals, mostly families and friends of ECD patients. We have always strived to squeeze as much good as possible out of every dollar donated. As the organization is maturing, we are looking for ways to create a more diverse and sustainable funding strategy. Although we believe the support of ECD patients, families, and friends will also be necessary to meet the needs of the organization, we are committed to finding other funding streams to help sustain the organization into the future.

What’s changing at your organization in the next year: The ECDGA is focusing on establishing long-term sustainability for the organization to continue serving the community for as long as needed. The ECDGA will be hiring its first full time employee in the next year to be better able to implement the organization’s strategic plan. In addition, the organization is working with other histiocytosis patient advocacy groups to build an international coalition called the Coalition of Histio International Patient Support (CHIPS). Through these activities we believe the future will be brighter for all who are affected by ECD and other histiocytic disorders.

Management Style
Management philosophy: Set a vision and plan how to get there in manageable tasks. Invite in anyone who wants to help and put them to work. Match the right person to the right task. Be inclusive, not exclusive, and respect all. Listen to what people have to say and stay flexible.

Guiding principles for running an effective organization: The priority should always be to help patients and families. Build partnerships and look for opportunities to collaborate. The more people who are pulling in the same direction, the better chance of getting there.

Best way to keep your organization relevant: Listen to the needs of the community and find ways to best meet those needs in a cost-effective manner.

Why people like working with you: Sincerity and passion. I volunteer my efforts to the organization simply because I desperately want to see an end to the suffering.

Mentor: Not sure I have a single mentor. The ECD patient and family community always challenge and motivate me in ways that are amazing. People that I admire and who have helped us create an effective organization are the great ECDGA Board and staff, the researchers and clinicians who work to help ECD patients daily, the people who work at the NIH, many of the patient advocacy organizations, and my parents who set a great example for me in how to live life.

On the Job
What inspires you: People who refuse to give up—patients, researchers, families.

What makes you hopeful: The energy patients and researchers expend to make things better and the number of good and generous people in the world.

Best organization decision: To host annual international medical and patient meetings to bring people together who are interested in tackling this horrible disease called Erdheim-Chester Disease.

Hardest lesson learned: That we cannot always control the outcomes in life. In spite of that, we must keep trying.

Toughest organization decision: Setting priorities.

Biggest missed opportunity: There are many. When there is so much to do and so little time in which to do it, there are many missed opportunities. Perhaps the worst missed opportunities are when someone has a great idea or is making a great effort, and no one offers encouragement. When that lack of support keeps an idea from being implemented or those efforts from continuing, then it is a horrible, missed opportunity. I hope that people will remain steadfast and do what they know is right even when encouragement is not readily forthcoming. Everyone has so much to offer. We need everyone working together to help overcome the difficulties associated with ECD and all rare diseases. If everyone does what they can, we will overcome and tackle this disease and others.

Like best about the job: Meeting people who want to make the world better for others is so motivating. This includes patients, families and medical professionals. I am always humbled by the patients who will enter research studies even when they feel it will not help them, but do it to help others. And the strength and dedication of the families and medical professionals who work tirelessly to help others is amazing.

Like least about the job: Too much to do with too little time and resources in which to do it.

Pet peeve: Sentences that begin with, “You should.” I would so rather hear, “We should,” or better yet, “We can.”

First choice for a new career: I hope that the efforts of the ECD community will result in ECD becoming a thing of the past. At that time, I will welcome full retirement.

Personal Taste
Most influential book: Not sure there is a single book. I find something worthwhile in most books, from Winnie the Pooh by A. A. Milne to those books that give us insight to the lives of others who have worked hard to change the world. I do like to read biographies.

Favorite movie: Casablanca—personal sacrifice for those you love and for what you believe is right and makes life more beautiful.

Favorite music: Classics and oldies. I like vocals, old and new.

Favorite food: Chocolate is my passion.

Guilty pleasure: Travel

Favorite way to spend free time: Travel