These are the individuals who have made significant, and highly
valued, contributions to our website and organization. - Karl
Schwartz
Jama Beasley
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Jama
Beasley is a 8-year Survivor who is a Levy Lymphomaniac (graduate vaccine patient). Her time is spent befriending newly diagnosed lymphoma patients, doing research for them, and public speaking regarding her experiences as a cancer patient. She credits her remission to Dr. Ron Levy’s human specific, idiotype, antibody vaccine from 1995, a supporting family, and her “wicked” sense of humor.
Jama was diagnosed with B Cell, Follicular, Large & Small Cleaved, Non-Hodgkin’s Lymphoma, Stage III-B in August 1994 at age 46. She had a significant abdominal mass that had compromised her heart. She took CVP chemotherapy alternating with Fludarabine for 8 courses. The original mass was reduced by 80%. With this goal met, she subsequently joined Dr. Levy’s vaccine program at Stanford University.
Czuczman MS, Grillo-Lopez AJ, White CA, et al. Progression free survival after six years (median) follow-up of the first clinical trial of rituximab/CHOP chemoimmunotherapy. Blood. 2001;98:601a. Abstract 2519.
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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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Betsy de Parry
Public Policy Advisor |
Betsy de Parry was diagnosed with follicular NHL in January 2002. Her disease failed to respond to the two types of chemotherapy that followed her diagnosis. In September 2002, she received radioimmunotherapy and has since remained disease-free. She has worked to educate patients about radioimmunotherapy and to ensure continued patient access to the treatment. She speaks to various groups about her experience and also wrote about it in her book, The Roller Coaster Chronicles.
Betsy and her husband live in Ann Arbor, Michigan where they own a land development and homebuilding company and she is vice president of marketing and sales.
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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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