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Patients Against Lymphoma

 

About UsAdvisors & Staff

Last update: 03/08/2015

These are the individuals who have made significant, and highly valued, contributions to our website and organization.  - Karl Schwartz

Susan Krivacic

Picture pending

As an ardent Patient Advocate for 22 years, she leads a local cancer patient support group, Friend’s of Cancer Anonymous, which was founded in 1989. In addition, she founded a support group for young cancer patients locally in Austin, Texas in 1990. She is also an Advisor to Patients Against Lymphoma (PAL). She is a member and volunteer of several other cancer non-profits. She has been a long-time supporter of the Lymphoma Research Foundation, having participated in several Lobbying Days on Capitol Hill for lymphoma cancer funding initiatives. She is currently a member of NCCN’s Non-Hodgkin’s Lymphoma Treatment Guidelines Panel and is a current member of two independent Institutional Review Boards (IRB). Susan Krivacic is a 22-year survivor of Non-Hodgkin’s Lymphoma. In addition, she currently serves as a Patient Representative/Consultant to the FDA and frequently presents at patient training workshops acts as a mentor to new patients for the FDA’s Office of Special Health Initiatives. She also currently serves as a Member of the Secretary’s Advisory Committee on Human Research Protections (HHS).

Ms. Krivacic has been employed within the life sciences industry since 1986. She is currently the Founding Principal and Consultant of PBG Consulting, LLC, a strategic management consulting firm serving the life sciences industry including clinical research entities and non-profit organizations. During the course of her professional career, she has authored and co-authored several articles and publications on conducting and outsourcing clinical trials, patient recruitment, and various strategic therapeutic market research reports. Ms. Krivacic received her Master of Public Affairs, MPAff, from the Lyndon Baines Johnson School of Public Affairs, Austin, Texas and completed her Internship at the US Embassy in Vienna, Austria. She received a BA, with Honors from the University of Texas. She was awarded a Fulbright Scholarship to the University of Zagreb, Yugoslavia.
 

Rich Bloom

Rich Bloom, a life long environmental and outdoor educator, is a survivor of both indolent and transformed aggressive lymphoma. His time is currently spent co-leading a renowned environmental education center and enjoying the out-of-doors. Diagnosed in July of 2000 (after having never spent a day in the hospital in his life!), he continues to learn how to navigate the at- times overwhelming and impersonal medical world in search of the best information, resources, and doctors to make informed choices in the emerging treatment of this challenging disease.

Information generated by clinical trials and research is key to getting an edge on successfully surviving this disease. We fight an uncertain battle, and although you quickly discover there are no guarantees, you can stack the odds incrementally in your favor. Lymphomation.org and PAL is the top site/organization in the search for information and guidance.

We can¹t control what has occurred in the genetic mutation that confounds our bodies, but we can control how we respond. To sit back passively and completely trust the opinion of an overworked or disinterested physician who likely is not up to speed on our disease is a dangerous proposition. Faith and trust certainly have their place, but in this disease - information and informed choice is king.

Diagnosed with stage IIIAS (massive splenomegaly) non-Hodgkin¹s Lymphoma, follicular mixed (grade II), B cell. While unsuccessfully chasing vaccine enjoyed a "miraculous" spontaneous dramatic full remission. July 2002 transformation to aggressive stage IV Diffuse Large B-Cell Lymphoma.  Radiation and eight cycles CHOP-R completed in 2002. Obtained complete remission to the molecular level. Harvested and cyro-preservation peripheral stem cells if potential relapse necessitates future autologous transplant. Presently in full remission. Started maintenance Rituxan in November 2003..

Toby Holland, Esq.
Public Policy Advisor

Pending

Carol Lee

Carol Lee, a long-time English and reading teacher, is a survivor of b-cell lymphoma, both aggressive and low-grade, since 1992. 
Carol is a valued participant in lymphoma education, support and advocacy groups.

She is also a manager of several online learning projects through Northwestern University's Online Collaboratory and evaluates online projects for the Collaboratory. Carol is presently an educational consultant specializing in training teachers in the use of collaboratory technology, brain research, and the multiple intelligences in the classroom.
 

 

 

Betty Walters

 

Betty Walters was diagnosed with follicular NHL in 2001. " I found the diagnosis overwhelming, but the search to find what treatment to follow even more overwhelming."

     "One of the main reasons that I am so happy to have the opportunity to work with PAL is my firm belief in the organization's mission: "Focusing on what we can do now to help win the battle against lymphoma." 

  
    "The day I accidentally found datafork.com (now Lymphomation.org) was the day I began to feel that I could gain back some control over my life by networking with people who had first hand knowledge of this disease and the possible treatments."
 
    "I think that all of us have a choice to make when diagnosed with any incurable illness.  We can accept the grim statistics or we can take back our power and accept the diagnosis, but not accept the prognosis.  I choose the latter and spend my days focusing on my part in the battle.
 
    "For the past twenty two years my husband and I have operated a resort in northern Minnesota.  Before becoming a resort owner, I taught secondary social studies in the suburbs of Minneapolis, Minnesota. We have recently sold our resort and will be retiring, which means starting a whole new adventure. 
 
Betty 
 
Follicular, small cleaved, B cell, grade one, stage IV non-Hodgkin's Lymphoma, W&W.
 

 

Nancy Lowis

Nancy Lowis has a degree in Biology with a concentration in Molecular Biology. She has worked in the science field for 12 years. Nancy is currently an editor for Lymphomation. Nancy enjoys gardening, reading and being in the out of doors.

 

 

 

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
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