Recognizing the Champions Among Us

CURE® 2018 MPN Heroes®

 

Friday, November 30, 2018 6:00 PM | The Hard Rock Hotel (207 Fifth Ave, San Diego, CA 92101)

GUEST SPEAKER: Scott Hamilton – American Figure Skater and Olympic Gold Medalist

 

Heroes Category: Commitment to the Individual
 
 
Barbara Abernathy, PhD
 

When Barbara earned her PhD and began counseling families of young patients with serious illnesses, she never anticipated that she’d face her own serious diagnosis: polycythemia vera (PV). Today, Barbara draws on her own 20+-year journey with cancer to offer a uniquely compassionate perspective to both the families she counsels as executive director of the nonprofit Pediatric Oncology Support Team in West Palm Beach, Florida, as well as the MPN patients who reach out to her for support.

Barbara is known for her tireless devotion to the MPN community—whether it’s sharing her own experience to help ease the anxiety of an MPN diagnosis, helping families navigate their way to services and other support they need, or speaking to senators and congressional representatives about the challenges and needs of MPN patients. She has also been a long-time volunteer for the Leukemia and Lymphoma Society, where she recently served as a regional board member. Aside from supporting individual patients, Barbara strives to raise awareness about MPNs and to promote more funding for treatment research, which she credits for saving her own life.

Despite considerable challenges over the years, including diagnoses of myelofibrosis and leukemia and a bone marrow transplant in 2013, Barbara forges on in being a much-admired advocate for the MPN community.

 
 
 
 
Mark Heaney, MD, PhD
 

Dr. Mark Heaney has devoted more than 20 years to conducting research toward better MPN treatments and to serving patients who are living with them.

He's led and participated in many impactful lab research studies and more than 20 clinical trials focused on MPNs and other rare blood cancers. He’s also known as a compassionate and generous physician to the more than 100 MPN patients he cares for.

In addition to his years of dedication to patient care and research, Dr. Heaney has actively pushed to raise awareness of MPNs through education and advocacy—especially through his work with Patient Power® and the Leukemia and Lymphoma Society—where he’s brought patients, physicians, and researchers together to learn from each other.

 
 
 
Susan Leclair, PhD, CLS (NCA)
 

Dr. Susan Leclair is well-known throughout the MPN community, especially for her approachability and down-to-earth explanations for MPN patients around the world who are puzzled by the technicalities of their conditions and test results.

Dr. Leclair makes herself accessible “live” on a number of list serves including MPN Net, where patients and caregivers can ask questions and get personalized answers via email about the meaning and significance of their lab report data—a service praised by patients near and far. She has also been a spirited speaker at many conferences and symposia over the years, has served on countless panels, and has been featured in Patient Power® and MPN Education Foundation educational videos.

Now retired from University of Massachusetts Dartmouth, Dr. Leclair spent more than 40 years as a clinical lab professional, focused on hematology, oncology, genetics, and bioethics. As a lab sciences professor for both medical and non-science majors, she also honed her unique ability to clearly explain technical scientific concepts using simple language, analogies, and illustrations that everyone can understand.

 
 
 
Lindsey Lyle, MS, PA-C
 

From the time she was 8 years old, Physician Assistant Lindsey Lyle knew she wanted to work in medicine. Following a traumatic childhood bicycle accident, she’d spent a lot of time under the care of physician assistants, among others, who inspired her. During her medical school rotations, she gravitated towards caring for patients with MPNs and other blood cancers.

Lindsey started her career working closely with a physician devoted to MPNs at University of Texas, MD Anderson Cancer Center. Seeing an unfilled need, she became passionate about educating both patients and medical providers about MPNs. Since returning to her home state of Colorado, Lindsey’s commitment to the MPN community has grown even stronger. She’s collaborating to build an MPN program at University of Colorado and is highly regarded among her patients and colleagues for her exceptional knowledge of MPNs, her individualized attention to each patient’s needs, and her enduring commitment to MPN education.

On that front, Lindsey has been a panelist in several videos and webinars for Patient Power® and University of Colorado. She’s also served as chair and moderator of roundtable discussions hosted by JADPRO (Journal of the Advanced Practitioner in Oncology) and currently serves as its MPN Updates editor.

 
 
Heroes Category: Commitment to the Broader MPN Community
 
 
Gabriella Hobbs, MD
 

Dr. Gabriela Hobbs is a rising young star in the field of MPNs, known for both her “leave no stone unturned” dedication to caring for patients as well as her promising and impactful clinical research.

In 2014, Dr. Hobbs established a dedicated MPN center at Massachusetts General Hospital in Boston, bringing these conditions to the forefront of the hematologic malignancy program and raising awareness about the need for more research. She’s developed several clinical trials focused on MPNs, and she also collaborates with other major US cancer centers toward better understanding the mechanisms that lead to MPNs and their progression.

In the office, Dr. Hobbs is known for her compassionate and holistic approach to patient care, with treatment modalities that include lifestyle modification, stress reduction, and exercise to help improve her patients’ overall health in addition to their MPN conditions. Outside of the office, Dr. Hobbs is active in patient education, often organizing patient information meetings in the Boston area, performing community outreach, and educating community healthcare providers about MPNs to bring greater awareness to these rare conditions.

 
 
 
Catriona Jamieson, MD, PhD
 

Dr. Catriona Jamieson and her team at University of California – San Diego Cancer Center have been making headlines in recent years for their groundbreaking research into cancer stem cells. Dr. Jamieson’s goal is to find more selective, less toxic therapies for MPNs and other blood cancers.

By using blood samples to study the DNA and RNA of patients with MPNs, Jamieson has focused on finding out how MPNs might start and what makes some cases progress. In the process, she and her team learned that errors in RNA appear to play a key role, driven by an editing enzyme called ADAR1. Dr. Jamieson’s team is now working on potential treatments that could “dial down” ADAR1 activity and hopefully turn off the mechanism that lets cancer cells make more copies of themselves. They’re also researching potential diagnostic tests that could detect ADAR1 activity, allowing physicians to target therapy against ADAR1 based on individual patient data. In the future, Dr. Jamieson foresees that ADAR1-focused diagnositics and treatments could allow for personalization of therapy, allowing for targeted treatments that could be optimally timed based on test results. Dr. Jamieson’s mission is to translate her lab research to the clinic as quickly as possible to make that a reality for MPN patients.

In the meantime, Dr. Jamieson works to help patients understand the latest MPN research findings, by speaking at events and creating informative videos for Patient Power® and the MPN Research Foundation.

 
 
 
Julie R. Libon, Patient Advocate
 

When Julie was diagnosed with myelofibrosis (MF) in 2014, she felt her mission was clear: to organize an event that could raise funds toward researching a cure. In 2015, she and her sister organized the first HikeMF, a 3-mile walk through the woods in suburban Boston, which they hoped might attract a couple dozen people and a little money for the MPN Research Foundation. They chose a hike as a way to pay tribute to a favorite family pastime they’d adopted as children. Julie was thrilled when 125 hikers turned out and together raised more than $25,000 for the cause that first year.

Since then the annual hike has gained even more participants, raising nearly $45,000 for MPN research this past year and spreading to other regions. Julie has helped people in other states organize local fundraising events, and she’s attracted followers around the globe who also hike on the designated HikeMF day.

Julie’s contributions to the MPN community don’t stop there. She helped organize the MPN Support Network, an online referral souce for MPN patients. And she’s active in MPN social media as well, serving as an administrator for the MPN Forum’s Facebook page.

 

 
 
 
 
Carole Brennan Miller, MD
 

Dr. Carole Miller has a passion for cancer research and for community service, and she’s made profound contributions to both over her long career.

As director of the award-winning Cancer Institute at St. Agnes Hospital in Baltimore, Maryland, Dr. Miller has grown their community-based research program over the past 15 years to include more than 30 ongoing clinical trials, particularly around blood cancers. Many of these trials have led to important breakthroughs and provide hope to many MPN patients faced with advancing disease and dwindling options. Patients from the area and across the country seek her care and expertise. Dr. Miller is particularly proud of her early work at Johns Hopkins University on a revolutionary drug that is now widely used to treat chronic myelogenous leukemia (CML). That work also shed light on the molecular changes that lead to malignancy and laid the foundation for targeted therapies that are a primary focus of current MPN research.

Dr. Miller is a nationally known expert on blood cancers, as well as a renowned community health advocate. She founded the Baltimore Blood Club, which brings together community and academic physicians to discuss clinical trials, difficult patient cases, and new treatment options with the broader goal of elevating patient care. She’s also worked with the American Society of Hematology, the Association of Community Cancer Centers, the Leukemia and Lymphoma Society, and other organizations to educate community physicians and patients about MPNs and other blood cancers and to raise awareness about them.

 
 
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