Rare Leader: Annie Achee, President of the National Leiomyosarcoma Foundation 

March 22, 2018

The Basics
Name: Annie Achee

: President

Organization:   National Leiomyosarcoma Foundation

Disease focus:  Leiomyosarcomas are uncommon malignant tumors that grow from immature smooth muscle cells, accounting for up to 20 percent of all soft tissue sarcomas. They appear most often in large blood vessels and the pelvic area, including the uterus, and, to a lesser extent, in the extremities like the thighs. In its metastatic state, leiomyosarcoma most commonly spreads throughout the bloodstream, lung, and liver. Age is considered a high-risk factor for this disease.  It can affect people of different ages, but the median age is 58 and a half.

Headquarters:  Cherry Hills Village, Colorado

How did you become involved in rare disease:  I became involved when my husband was diagnosed in 2011 with leiomyosarcoma.

Previous career: Human resource manager at the Federal Highway Administration in the Department of Department of Transportation.

Education:  B.A. in psychology and management, Colorado Women’s College / University of Denver; M.A. in human resource management, Webster College in St. Louis

The Organization
Organization’s mandate: We provide support and education to patients, families, and caregivers to encourage self-advocacy, learn more, and ask better questions during their medical appointments They need to be part of the treatment plan with the oncology care team.  We also want to stand behind the researchers that are the lifeline of survivorship for the future,  through funding support for their research initiatives.

Organization’s strategy: We’re small but mighty in mind, spirit, and capabilities. We make sure we’re always there for the patient. They pick up the phone and call us. The caregivers call us. The families call us.  We reassure them, give them hope, and the resources they ask for—non-medical advice—and help them find their way in this difficult diagnosis journey. We help them navigate the treatment journey and let them know what they should be able to expect upon initial diagnosis, during the treatment phase, and in survivorship/care planning after treatment. We try to anticipate what information is vital to their needs through our two websites, annual patient-family-caregiver education symposia, weekly newsletters, interactive programs to connect patients with research clinicians, monthly telecons with patients/ families, and special alerts.

Funding strategy: We’re not the best at initiating fundraising efforts.  We feel that our work and the way we conduct ourselves and carry out our mission and purpose should speak for us. People get to know us through our patient education programs, through our website, and through our one-one-one conversations with patients. If they offer to support us, we’re grateful for that. We’re not large enough to have major fundraising events. We have great stories of people who have felt moved to fundraise for leiomyosarcoma research through our foundation.  A little eight-year-old girl who was honoring her dad who had died from this disease,  had a lemonade stand and raised $8,000 for research in honor of her Dad.  What an inspiration from someone so young! We like to refer to donations as truly “investments in the future of advancing treatment and improving survival.”

What’s changing at your organization in the next year: We’re expanding our horizons in terms of joining more team work groups through the American Association of Clinical Research. We’re in the Tumor Microenvironment Work Group and Scientist Survivor Program. This further allows us to delve deeper into the research landscape for the future of what might be possible for this rare sarcoma. We want to share new information as much as possible, as quickly as possible, with patients and their families.  The Foundation also is in a collaborative alliance with the Sarcoma Alliance for Research Through Collaboration, as members, and as participants in a new patient advocacy organization coalition,  to try to help foster organizational collaborative relationships that will best serve patients and families. That’s one of our goals within the sarcoma community. If we can advance collaborative partnerships, achieving more together is better.

Management Style
Management philosophy: We’re laser focused on our mission and purpose, with continuous evolution of thought, creative ideas to  expand support services,  and build awareness of leiomyosarcoma. Encouraging new ideas from our dedicated Board and volunteers is important. Encouraging and supporting creative thought for new projects by the team is key. It is rewarding to appreciate each other’s skills and ideas.

Guiding principles for running an effective organization: Staying focused, with genuine caring and consideration of everyone within the foundation, and our followers and supporters. Our work should always have in mind the attitude of gratitude for everyone we connect with: patients, families, caregivers, researchers, donors, and other organizations. Keeping the team spirit through encouragement, inspiration, and appreciation is always the cornerstone of our efforts.

Best way to keep your organization relevant: Keep moving forward through involvement in many corridors of rare cancer research. Finding new opportunities to get involved in research groups and collaborative opportunities with others. Our partnership with Rare Cancer Research Foundation,  for the Cancer Cell Line Project, one of our signature program is a patient-driven, tumor tissue donation program to amplify cancer cell line development and generated data that is meaningful and valuable for global research initiatives.

Why people like working for you: I approach my collaborative relationships with genuineness, passion, and enthusiasm. They know they can have faith and trust in me and in the organization overall.  Professional integrity is another cornerstone of reaching out to other organizations to partner for the greater good of patients, families, caregivers, and researchers. The National Leiomyosarcoma Foundation has a wonderful reputation and is well respected for the daily efforts to be there for patients/families/caregivers and colleagues from other organizations. And we are there answering their calls day and night.

Mentor: I have many mentors. I learn so much from everyone with whom I come in contact. Denise Reinke of the Sarcoma Alliance for Research Through Collaboration is someone I look up to. The courtesy she extends to everyone is inspiring, always making everyone feel most valued and appreciated.  Marcia Horn of the International Cancer Advocacy Network is also someone I admire.  She is very dynamic, involved in so many projects and programs while heading an amazing organization that serves patients on a global scale.

On the Job
What inspires you:  I am inspired and energized by honest, trusting relationships,  good  communication, and professional integrity with those I am able to collaborate with, to establish meaningful partnerships.  Being able to count on others and for them to feel the same way about me, and the foundation is  so important to me.

What makes you hopeful: I’m hopeful for the ongoing advancement of sarcoma research and discovery.  There’s such an explosion of research going right now.  I have the upmost admiration for our researchers’ dedication and commitment to unlocking the difficult uniqueness of leiomyosarcoma.

Best organization decisions: Organizing more structured patient-family-caregiver leiomyosarcoma education programs. Creating two websites—one dedicated to patient/caregiver resource support and assistance and the other one devoted to research and clinical trial updates. Another rewarding decision has been to initiate representation of leiomyosarcoma for the Broad Institute’s Cancer Cell Line Project through partnership with the Rare Cancer Research Foundation. That was important to be able to encourage patients by offering the opportunity for them to directly impact research for the future. We were one of only ten rare cancers selected by the Broad Institute of MIT/Harvard to be part of this pilot program.

Hardest lesson learned: Progress cannot happen fast enough for me.  There is so much I want to accomplish and so much I want to learn.  Overcoming disappointment is difficult for me. Rising above it with grace, courage, and strength to keep moving forward is a life-long lesson for me. To keep the faith that all good things will always be on the horizon is what I strive for every day. Hoping for my husband to stay stable after 7 years of survival from his diagnosis of leiomyosarcoma is a light that shines bright for me to continue to try to help others through their difficult journey and I try to help them every day.

Toughest organization decision: I have not yet had a tough decision yet. The foundation will always be evolving and growing in direction and vision. In October I will have completed my third year in leadership of the National Leiomyosarcoma Foundation.  This foundation is in its 21st year, having been started by patients and families in 1997 who were scared, and could not pronounce or spell leiomyosarcoma. We are in a good, solid place in the support and advocacy services we provide  to the LMS community, with appreciation conveyed by those that come in direct contact with us. We continue serving with our attitude of gratitude.

Biggest missed opportunity: When we are unable to receive Congressional approval for nationwide
awareness of leiomyosarcoma and sarcoma. It is difficult to fail in this. The foundation was able to receive Congressional approval for National Leiomyosarcoma Day on July 15, 2016, but we were not able to repeat that success in 2017.  We are now very much hoping for a 2018  National Sarcoma Awareness Month in July, and National Leiomyosarcoma Awareness Day for July 15, 2018.  We remain hopeful for a bipartisan co-sponsorship of the resolution submitted for review. Senator Deborah Stabenow, D-Michigan, has been our champion for three years. Steve Baker, mayor pro tem of Berkley, Michigan, and the designated National Leiomyosarcoma foundation legislative liaison, has been working hard to represent  the foundation’s efforts to build  separate and distinct national awareness initiatives.

Like best about the job: Meeting patients and their families and having programs that they truly appreciate and value. When they ask if we are coming back, that is most gratifying to hear.  It is a confirmation that we have made a difference in their lives for the better.  Additionally, interacting with the researchers to collaborate on education programs or research projects for funding, means so much to us to have the opportunity to build such wonderful relationships with them. Participation in special workgroups to learn and exchange ideas and grow new relationships is quite special.  All of it is so rewarding.

Like least about the job: Trying to overcome  competitiveness is not pleasant to face.  This should not exist in the world of cancer support. There is no place for it. There should be a united voice that represents the patient-family community. Together we can be stronger for their sake. People are just trying to survive and live as long as they can. A unified effort and voice on their behalf would serve them best.

Pet peeve Missing an opportunity to cultivate a united voice and united efforts, allowing for greater achievements on behalf of this rare cancer community is a missed opportunity for them to be well served.

First choice for a new career: Combined physician and lawyer. I think both complement each other.

Most influential book: Unbroken: A World War II Story of Survival, Resilience, and Redemption by Laura Hillenbrand  and The Boys in the Boat: Nine Americans and Their Epic Quest for Gold at the 1936 Berlin Olympics by Daniel James Brown.

Favorite movie: Doctor Zhivago and The Bishops Wife

Favorite music: The Beach Boys and The Beatles

Favorite food: Lobster

Guilty pleasure: Tiramisu,  milkshakes

Favorite way to spend free time: Travelling with my husband, a seven-year LMS survivor, and my daughter. Every day is a miracle and a true gift.

March 22, 2018

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