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Patients Against Lymphoma

 

Patients Against Lymphoma (PAL)

Patients partnering with scientists to make progress against lymphoma

Last updated: 01/21/2014

TOPICS
Contact Us
| Board, Advisors and Staff | Detailed Mission
Visitor Comments | Accomplishments | Advocacy Perspectives | Approach

PAL was founded in 2002 by patients - for patients.  Our focus is on providing evidence-based information - independent of health industry funding - and raising awareness of clinical trials in ways that foster routine and informed consideration.

About US: CONCISE | Lymphomation.org web stats - 2012

We advocate for clinical research that is patient-centered - focused on answering critical research questions while having the potential to also meet the clinical needs of the study participants:

Achieving the dual requirements of being Good science AND Good medicine!

Because our focus is on providing clinical trial information, we have chosen to be independent of health-industry funding in order to avoid even the appearance that our content is influenced by a financial conflict of interest. 

... This is not meant to disparage the important role of the industry in developing and evaluating innovative therapies for disease.  Indeed patient access to new therapies would not be feasible without industry investment.

We also advocate for a health care system that provides all patients with access to the full range of effective treatments, standard and investigational.

"It is well known that excellence in clinical trial design (which includes acceptance of the protocol by the referring physician and the patient) will accelerate the introduction of new treatments into the general practice of oncology and improve agent development for cancer therapy and prevention."

Remembering our Founding Members

Page Irby

Founding  board member

Antonio Reis

Founding advisor

Charles Brennan

Founding board member
 

More about PAL

We actively engage the research community - providing patient perspectives on the direction of clinical research and the design of clinical trials. 

Our rule is to provide hope without hype. 

We help the patient community to more critically evaluate the strengths and weaknesses of medical publications, media reports, ... and in particular, testimonials.

We continuously update our web site in response to
  visitor questions and patient needs, guided 
by our scientific advisors and the published medical literature.

As noted, we maintain our neutrality by accepting only public support.  

We have chosen this path in order to provide evidence-based perspectives on clinical research, drug approval, and access to the standard of care ... ensuring that our advocacy efforts are driven only by what we feel is in the best interests of patients.

Because there's an urgent need for safer and more effective therapies, we provide tools to help patients to find trials.

   In addition to the content we develop we also link visitors to reputable sources of information on a comprehensive list of topics, specific to lymphoma.

______________________________________________________
Patients Against Lymphoma
Founded in June of 2002
About Us Brochure PDF

3774 Buckwampum Road 
Riegelsville, PA 18077

We are a 501(c)(3) non profit organization
Federal Tax ID # 51-0426732
   
Phone: 610-346-8419
Fax: 801-409-5736
Email:  KarlS

______________________________________________________
Directors, Advisors, and Staff

~
Board of Directors Ethics Policy  PDF
~ Communicating Risks and Benefits Policy PDF
~
IRS Filing, 2011 PDF
 
Founder and President's CV

Board of Directors
Scientific Advisors
Advisors and Staff

 
 
 
Focusing on
what we can
do now to help win
the battle
against lymphoma
Karl1.jpg (8404 bytes)

  Karl Schwartz,
president 
and co-founder

Founder and
President's CV

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Our Mission 

Founded by patients for patients, our mission is to provide support and EVIDENCE-based information on lymphoma and its treatments, independent from health industry funding -- with a focus on helping patients to routinely consider clinical trials.

Leading in efforts to:
 
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Educate community physicians and patients about the importance of participating in clinical trials. 

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Educate patients and caregivers about how to recognize bias and conflict of interest in scientific data, and medical claims; and how to distinguish between weak and strong medical information.

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Encourage the cooperation of all lymphoma and cancer organizations so that we may better achieve our common goals and do effective advocacy work.

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Improve access to the compassionate use of appropriate investigational therapies for patients in need who are not eligible to participate in clinical trials.

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Increase public awareness of lymphoma, including risk factors, symptoms, the burden of the disease, and research opportunities.

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Provide online peer-to-peer support groups that provide opportunity for patients and caregivers to encourage each other and exchange useful and evidence-based information.

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Provide online research tools and educational materials for all individuals who support lymphoma patients.

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Provide informed patient perspectives on clinical trial design and FDA decisions, and to vigorously represent the patient's perspective in matters of concern.

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Provide well-researched answers to every visitor question in a timely manner. 

We sincerely hope that you will participate in the process and make this site your own by sending comments or suggestions, asking questions or by making a tax-deductible donation

 

 

 

 

Support

Information

Advocacy

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Accomplishments

Support | Advocacy

See Visitor Comments for what visitors say about us

Highlights:

We estimate our value to the community from direct feedback, our participations in clinical research projects, and also by our website and support forum statistics.
  1. Our president, Karl Schwartz:
    Member of the Alliance Cooperative Group,
    serving as patient advocate on the Lymphoma Committee
    New member of the Stand Up to Cancer Scientific Advisory Committee
    as of 4/18/2012.
    Participant at Vail Colorado as a member of the advocate faculty in the ASCO-AACR Methods in Clinical Cancer Research Workshop

    New Member, NCI Steering Committee for Lymphoma, as of April 2013

     

  2. We are expanding our reach with new media:
     
     
     
  3. Teleconference presentation for Nurses and Social workers:
    Sponsored by Lance Armstrong Foundation,
    Leukemia and Lymphoma Society, July 2009
    Finding & Evaluating Online Medical & Support Information
    Slides: http://www.lymphomation.org/find-eval-final.PDF 
  4. Our study published:

    ASCO 2009: 
    Interest, attitudes, and participation in clinical trials among lymphoma patients with online access.  
     JCO  (fixed)
  5. Participant, FDA Advisory Committee (ODAC)
    Romidepsin for relapsed advanced cutaneous t-cell lymphoma (CTCL)
    Pralatrexate for aggressive relapsed Peripheral T-Cell Lymphoma (PTCL)
  6. Letter to FDA on Transparency initiative PDF
  7. Moderated support forums:  

    7 groups, 2,657 subscribers (2/09)
  8. Alexa.com ranking:

    We are ranked 321,000 among all websites in the world
    and 73,000 among all sites in the US  (8/10)
  9. AWStats reporting:

2012 Website statistics lymphomation.org

 

Unique visitors

Number of visits

Pages

Hits

Total

584,409

789,569

1,736,800

10,997,756

Monthly
Average

48,701

65,797

144,733

916,480

 

    Yahoogroups editor's pick in 2005: NHL-info:

Research Advocacy Highlights:

Advocacy Objectives and Recent Accomplishments:

        To identify the obstacles oncologists have to referring patients to clinical trials. 

o        ACTIVE: Oncologist Survey: http://www.lymphomation.org/docsurvey.pdf

        Proposing enhancements to the Clinicaltrials.gov registry, to enable locating clinical trials by the clinical circumstances of  patients.

o        ACTIVE: Letter to NIH: http://www.lymphomation.org/settingsrch.pdf

        To identify patient attitudes about Clinical Trials and obstacles to enrollment, and to share our findings with the research community.

o        COMPLETED: Survey for patients: http://www.lymphomation.org/ps1.htm

o        COMPLETED: Lymphoma and Myeloma Conference, Poster:  http://www.lymphomation.org/IAP.pdf | http://www.lymphomation.org/IAP-narr.pdf

o        ACTIVE: ASCO abstract submission: http://www.lymphomation.org/iap2009.pdf

        Advocating for cooperative, standardized biospecimen resources
 supporting correlative and translational clinical research.

(Research that can more efficiently translate insights about the biology of tumors into better therapies for patients, and tailoring such therapies to individual patients.)

o        ACTIVE:  Making the case for a biospecimen-based resource:
http://www.lymphomation.org/NBN.htm

o        COMPLETED: Letter to NIH on Custodianship and Ownership Issues in Biospecimen Research Symposium-Workshop http://www.lymphomation.org/pt_use.pdf 

        Consulting on study design to help investigators and drug sponsors identify ethical issues and aspects of a study that may be desirable or undesirable to patients considering trials. 

o        ACTIVE: Harmonizing Research Goals with Meeting Clinical Needs Patient Perspectives on Trial Design:
http://www.lymphomation.org/adaptive_l.pdf  

        Recommending enhancements to the SEER registry. 

o        ACTIVE: Letter to SEER regarding subtype statistics: http://www.lymphomation.org/seerltr.pdf

 

Other:

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Participant in advocacy efforts to modify the clinical trial design of cancer vaccines.  2001 See for details
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Participant, Progress Review Group for Blood Cancers, NCI, 2001
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Participant, FDA ODAC Patient Consultant program 
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Presentation to Patient Representatives - Slides:
close-call-final.pdf
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Presentation to scientific and regulatory community: 
Patient's Perspective: the Demand for Innovation vs. Safety 

Leigh Thompson Renaissance Conference, Charleston, SC, 2005
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Participant in the "Chronic GvHD: The Next Frontier in Transplantation Medicine", NCI 2005

Providing patient perspectives on clinical trial design.
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Participant in the SEER workshop, NCI, 2005.

Providing perspectives on the need to provide statistical information on the subtypes of lymphoma - that there is a significant gap in the information provided as of 2005. See our follow up letter for details
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Participant in the NCI National Biospecimen Network Workshop, NCI, 2005

See for details
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Exhibitor: AACR Molecular Targets and Cancer Therapeutics 2005  
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Dec 2005: Speaker National Press Club

Providing patient perspectives on The Cancer Genome Atlas (TCGA)

a large-scale collaborative effort by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) to systematically characterize the genetic changes that occur in cancer. 

See for details:  NCI | PAL
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April 2006: Presentation at Favrille Investigators Conference: Harmonizing Research Goals with Meeting the Clinical Needs of the Participants  PDF 
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April 2006: Presentation: Strategies for Finding and Evaluating 
Medical Information  PAL pdf  

Gilda's Club Delaware Valley
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July 2006:  Presentation: Harmonizing Research Goals with the Clinical Needs of Patients  

Event:  Trial Design Innovation Accelerating Safer Drug Development with Adaptive Trials, Washington DC,  

Bio | Slides with Narrative
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February 2007: Report on survey: Interest, attitudes, and participation in clinical trials among patients with lymphomas

http://www.lymphomation.org/ptsurvey1.pdf  
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Dec 2007: Grassroots effort pays off: 

Advocacy initiative to restore full payments for Radioimmunotherapy by CMS, spearheaded by PAL, succeeds!  

Medicare Act includes Legislative fix that 
will
save RIT!   ... then: House votes 417 to 3 to, Bush signs bill.

House and Senate Pass Medicare Legislation to Freeze 2008 Reimbursement for Therapeutic Radiopharmaceuticals at 2007 Levels
Our Letters and Blogs on this issue: 
Our letter to CMS on proposed rate cuts 
Patient-driven driven advocacy 
What's at Stake  
We're not asking for charity
Your Help is Needed 
Will Washington Sentence Lymphoma Patients to Death?

 

In Memory

In memory of Page Irby, dear friend, colleague, and founding member
and Charles Brennan, beloved director and financial advisor to  PAL 

March 11th, 2008: Page Irby died after 14 years of living with non-Hodgkin's lymphoma. We are deeply saddened today to learn of her passing. Page was valued friend, colleague, and founding member of PAL. Page was and will remain an inspiration to me in her approach to life. As you know, she was committed to helping others to navigate the medical system and was an articulate advocate for becoming an informed and proactive patient.

May 2, 2008: Charles Brennan, a member of our board since PAL's inception, passed away this morning. We met in 1997 when his wife, Penny, was receiving treatment for lymphoma, and we became fast and very close friends. He had recent surgery for an aneurysm which led to a stroke, followed by an infection. In addition to our friendship, Charles, a retired CPA with considerable corporate experience, provided invaluable guidance on how to administer the accounts of PAL. He leaves behind many close friends and fond memories.

 
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. 
Patients Against Lymphoma, Copyright 2004,  All Rights Reserved.