These are the individuals who have made significant, and highly
valued, contributions to our website and organization. - Karl
Schwartz
Susan Krivacic
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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.
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Rich Bloom
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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..
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Toby Holland, Esq.
Public Policy Advisor |
Pending |
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Carol Lee
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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.
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Betty Walters
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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.
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Nancy Lowis
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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. |
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