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Patients Against Lymphoma

 

About Patients Against Lymphoma (PAL)

Last updated: 11/18/2014

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

About PAL printable brochure | Why PAL? ... video slide show 

We are Patients Against Lymphoma (PAL) a non-profit group founded in 2002 by patients for patients.  PAL provides support, education, and evidence-based resources on lymphoma and its treatments in order to meet the information needs of the lymphoma community: patients, caregivers, and medical professionals.

About Us .. brochure

Education
 The topics we provide on lymphomation.org are based patient questions and needs. Our content is evidence-based, guided by our scientific advisors and the published medical literature.  

Keeping Current  We help patients to keep up with emerging approaches to treatment.  We provide also  commentary on the latest scientific reports - with a focus on levels of evidence.  We also link the community to reputable sources of information on lymphoma topics.

Clinical Trials
  Informing patients about investigational therapies can be a critical way to provide support for lymphoma patients - such as when standard therapy is no longer effective.   We provide education on investigational agents, reports, and tips on how to discuss trials with our doctors and second-opinion experts.

... We provide patient-friendly tools to help the community to locate trials that may be appropriate for the patient's type of lymphoma, treatment status, or to find trials based on the type of study drug. 

Research Advocacy We are liaisons with the research and patient communities -- helping patients to understand the science and scientists to better understand patients   the primary stakeholders in clinical research.
 

Remembering PAL's founding members

Page Irby

Founding  board member

Antonio Reis

Founding advisor

Charles Brennan

Founding board member
 

Research Advocacy   Making additional Progress Against Lymphoma is urgently needed and requires the participation of patients - cannot be done without our consent to participate in studies or to give tissue and blood for correlative scientific research.

PAL engages the research community - providing patient perspectives on the direction of clinical research and the design of clinical trials.  We advocate for clinical research that is patient-centered - focused on answering critical research questions ... but also having the potential to meet the clinical needs of the study participants.

Proudly serving as patient representative:  Alliance Cooperative Group, Lymphoma Committee, FDA Advisory Committee, NCI: Progress Review Group, -Biospecimen Best Practice Workshops, -Steering Committee - Lymphoma, -Centralized Institutional Review Board, Patient Advocate Faculty ASCO/AACR Workshop: Methods in Clinical Cancer Research, Stand Up to Cancer, Joint Scientific Advisory Committee

To help make progress study designs must achieve two goals:
Good Science
(providing reliable answers to important clinical questions)
AND
Good Medicine (meeting the needs of the study participants)

We are the primary stakeholders in clinical research as it is the patient that must endure the disease and the limitations of existing therapies.  (Not the shareholders, the researchers, or the clinical investigators.)

Helping patients to understand the science
and scientists to better understand patients
the primary stakeholders in clinical research

Finally on a personal note:  my spouse would not be here today (taking care of me and enjoying her life) if not for a new drug used in a novel way a new drug made possible by excellent science but also by the patients willing to participate in the studies. The studies were essential -- to identify how to use the new agent safely and to test its efficacy.  To focus on the plausible we had to learn (in our case the hard way) how to recognize suspect claims and theories the claims made for alternative medicine for cancer.

Here we ask for your help as you make our work possible - a mission that depends entirely on public support.


Patients Against Lymphoma
Providing education, support, and research advocacy --
independent of industry funding - entirely dependent on public support
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


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

Lymphomation.org web stats - 2012 

 
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.