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
 
Rebecca N. Claassen, RN, BSN, OCN
Nominator: Lauren Wright
 
Rebecca N. Claassen is an MPN Hero in the category of Commitment to the Individual. Becca has demonstrated outstanding support for patients with MPNs. As a dedicated Unit Educator at the University of Kansas Cancer Center, Becca has brought a greater understanding of MPNs to the nursing staff. Her fervent advocacy and teaching about MPNs has gone beyond mere communication. Her efforts have helped colleagues make a positive impact on the quality of care for patients with MPNs.

In caring for patients, Becca provides meaningful guidance about financial assistance, clinical trials, and treatment options, and support avenues to help them overcome daily challenges. In short, her tireless advocacy brings MPNs to the forefront for her peers and provides a sense of hope for patients.
 
 
 
 
David Allen Denny, Patient Advocate
Nominator: Diane Blackstock
 
David Allen Denny is an MPN Hero in the category of Commitment to the Individual. He is affiliated with 2 online support groups: the Myelofibrosis Private Support Group and MPNforum.

David is passionately committed to helping patients with MPNs overcome obstacles. Through daily e-mails and messages of support, he comforts and guides online members to proper medical resources, financial information, current studies, and other educational materials. David not only welcomes people into the MPN community, but he also strives to empower individuals to ensure that their voices and concerns are heard. Because he has selflessly volunteered countless hours, David has helped hundreds of people in the MPN community get the vital information they need to help manage their MPNs.
 
 
 
 
Jason R. Gotlib, MD
Nominator: Andrea Linder
 
Dr. Jason R. Gotlib is an MPN Hero in the category of Commitment to the Individual. He is an Associate Professor of Medicine (Hematology) at the Stanford University Medical Center who is also an international leader in MPN research.

Recognized for advancing the science of MPNs, Dr. Gotlib is the Principal Investigator for a number of clinical trials in the classic MPNs, and for a database registry specifically for MPN research. In addition, he is acclaimed for his leadership in professional and patient education conferences. Besides mentoring medical fellows and serving as the Editor-in-Chief of The Hematologist, Dr. Gotlib is highly regarded by his patients for his dedication and sincerity—and for providing superb individual patient care.
 
 
 
 
Chris Holroyde, MD
Nominator: Robert Romance
 
Dr. Chris Holroyde is an MPN Hero in the category of Commitment to the Individual. As a specialist in hematology/oncology at the Phoenixville Cancer Center, Dr. Holroyde consistently demonstrates patience and endurance in helping to improve the lives of his patients. With each individual, he balances a thorough explanation of the MPN disease state with compassionate care. It is not uncommon for Dr. Holroyde to answer patient e-mails within an hour, effectively addressing questions and easing patient concerns. He enables patients and caregivers to understand the importance of their monitoring and treatment plans, inspiring a confident, renewed perspective. As one patient put it, “The most important thing is that I’m a functional dad [again].”
 
 
 
Heroes Category: Commitment to the Broader MPN Community
 
David T. Boule, Patient Advocate
Nominator: Richard T. Silver, MD
 
David T. Boule is an MPN Hero in the category of Commitment to the Broader MPN Community. His activities have supported published research, international patient outreach, strategic planning for the MPN Research Foundation, and grant pledges in excess of $4 million for the Myeloproliferative Neoplasm Center.

David’s dedication to improving the lives of people with MPNs is backed by unparalleled organizational leadership. He is Chair of the Finance Committee and Treasurer of the MPN Research Foundation, and serves as President of the Cancer Research & Treatment Fund, an organization emphasizing MPNs. Recently, David led the 8th International Patient Symposium on Myeloproliferative Neoplasms, one of three biennial educational events that he organized for patients and their families that highlights developments in MPN research. The thought of finding a cure for MPNs is what drives David’s sensitivity to the needs of individual patients. To that end, David has had an enormous impact on the MPN world.
 
 
 
 
Harvey Lawrence Gould, Patient Advocate
Nominator: Diane Blackstock
 
Harvey Lawrence Gould is an MPN Hero in the category of Commitment to the Broader MPN Community. In spite of his myelofibrosis (MF), acute myeloid leukemia, and subsequent allogeneic stem cell transplantation, Harvey’s indomitable spirit, sense of humor, musical talent, and love of life inspired others. “Harvey oozed HOPE—even in desperate times.” As a regular columnist for MPNforum, Harvey served on the MPNforum board of directors and the editorial review board. As a friend, however, he had a way of devoting himself wholeheartedly to the people in his life. Those close to him have said, “To be in his presence was to have his full attention.”

Harvey is recognized for helping to advance the science of MPNs because he advocated for free MF genetic testing/studies offered by 23andMe. In addition, his generosity has contributed to the CREATE seminar (CRISPR/Cas9 Edited Autologous Transfusion Exploration) to improve the stem cell transplant process.
 
 
 
 
Susan Melvin Hill, Patient Advocate
Nominator: Joanna Jost
 
Susan Melvin Hill is an MPN Hero in the category of Commitment to the Broader MPN Community. Susan’s journey began when she transitioned from myelofibrosis patient to dedicated patient advocate. In her dedication to help others with MPNs, Susan established Idaho’s first and only MPN support group. She currently mentors patients with MPNs in several states.

Susan continues to be involved in grassroots awareness activities. These include organizing the annual Rare Disease Day at the Idaho State Capitol, working to include MPN educational materials in the Leukemia & Lymphoma Society’s annual Light the Night Walk, supporting MPN Awareness Day with Governor’s Proclamations, and providing feedback on educational and patient advocacy materials for MPN publications. When she is not supporting MPN activities, Susan somehow finds the time to knit blankets for babies in the neonatal intensive care unit of her local hospital.
 
 
 
 
MPN Research Foundation, Patient Organization
Nominators: Zhenya Senyak and Michelle Woehrle
 
The MPN Research Foundation (MPNRF) is an MPN Hero in the category of Commitment to the Broader MPN Community. As one of the premiere organizations that reaches the entire MPN community of patients, family members, doctors, and researchers, MPNRF has a single goal: to stimulate original research in pursuit of new treatments—and eventually a cure—for MPNs. Guiding MPNRF are Chairman of the Board of Directors, Robert Rosen; President Barbara Van Husen; and Executive Director Michelle Woehrle. It is through their team approach that MPNRF was nominated as an MPN Hero.

Bob formed MPNRF in 1999 after being diagnosed with polycythemia vera. Barbara joined him to organize the solicitation and awarding of grant proposals for MPN research. Together, they directed a significant investment into promising research options, with the aim to benefit patients as soon as possible.

Along with Michelle, MPNRF recently created a framework to fund new investigators and has given away more than $10 million for more than 50 international research projects. Evidence of the organization’s impact on the broader MPN community can be seen with the recent MPN Challenge grants. These grants have resulted in the discovery of the CALR mutation and in the creation of the MPNRF website (www.mpnresearchfoundation.org), which has registered nearly 19,000 patients and supporters and provides information on MPNs and clinical trials to nearly 200,000 visitors annually.
 
 
 
 

 

×

Sign In

Not a member? Sign up now!