2002
Review
What we've accomplished in the past year
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ORGANIZATIONAL REVIEW:
Patients Against Lymphoma is a legal entity
Board of directors held two meetings
Patients Against Lymphoma qualified for IRS tax exempt status
We met expenses and have a positive balance.
We've received donations to help pay 2003 expenses.
We now operate on a higher bandwidth -- we can work faster and better.
We've developed our mission out of necessity:
ADVISORS:
The input from all advisors is so important, and appreciated. Thank you!
We have the following new scientific advisors:
Dr. Andrew Croaker, M.D.
Dr Lucien Joubert, M.D.
Dimitris Placantonakis, Ph.D.
Dr. Susan Olender, M.D.
Lynda Olender, R.N., A.N.P., C.N.A.A.
Bios and a description of these advisors, and our many anonymous scientific advisors are
now depicted in an abstract image on the following page:
Our dedicated staff of lay advisors and volunteers include:
Carol Lee
Jama Beasely
Jonathan Lipsky
Betty Walters
Robert Miller
WEB UPDATES:
Too numerous to list here, but you can review the scope of our site by
browsing here:
Here are some highlights of new and updated web page:
We've composed letters to CMS and Dr. Rosenberg, and many letters to the FDA on clinical trial design and access to investigational therapies.
INDICATIONS WE'VE MADE A DIFFERENCE:
WEB STATISTICS:
 | Over 100,000 visitors counted for the year ~ 2,000 per week. |
| Over 40,0000 different computers logged on. |
| Many (as yet uncounted) questions and guest book entries received. |
| Many uncounted thank you notes. |
BEXXAR:
The ODAC vote in favor of Bexxar validates our perspective on it's delay.
Our petition to the FDA might well have had an impact.
POSITIVE FEEDBACK:
| The NIH praised our work done to simplify use of clinicaltrials.gov for NHL pts. |
| Good feedback from the LRF Education forum about our site reported by Jama Beasley |
| Good feedback about our Medicare letter (CMS), including an endorsement and praise of the letter by the Lymphoma Foundation of America. |
| The NIH responded favorably to our "thoughtful" questions about SV40 and NHL. |
| Endorsements in the form of kind financial contributions. |
GOALS FOR 2003:
| Execute and refine our mission. |
| Provide more comprehensive links to resources for each subtype of NHL, each on a separate page, including links to clinical
trials for each. |
| Provide compelling arguments to the community to do the small acts required to affect public policy and raise awareness of NHL and the issues that relate to providing the best hope that better treatments will come in time to help us. |
| Become an informed voice of the patient and caregiver community that's respected widely. |
| Reach out to the community and to professionals for input and strive to maintain credibility and freedom from biases. |
| Provide first- rate and concise access to reputable information. |
| Help patients to learn to use information tools, how to translate the jargon, recognize dubious information.... |
| Reactivate the datafork list serve group so that professionals can join and exchange technical ideas on matters of importance without being overwhelmed with the volume of emails from the patient support lists. |
| Recruit individuals (professional and lay) to help with all of the above, and create methods to make it easier to do. |
| Identify ways to raise funds and refine our requests for financial assistance so that our work can continue and our sphere of influence can grow. Recruit volunteers to do fund- raising work in order to free
our staff to work on content and policy issues. |
| Write policy papers on:
CT radiation exposure
The urgent need to fund and carry out genetic profiling of tissue in order to take the guess work out of treatment decisions. * (started)
Transparency in drug evaluations - and other policies that can speed drug development and evaluations.
SV40 - make sure the questions about it's possible link to NHL are thoroughly investigated.
Clinical trial participation ...
We think that writing compelling letters about patient needs and
priorities distinguishes us from other organizations, perhaps because
we are beholding to other groups and interests -- pharmaceutical sponsors, scientists, doctors, organizational, research, etc.
We are unique in that we focus on *patient perspectives* within the current system, and how the system must be refined to produce and deliver better services and more effective and less toxic
therapies. When you think about it, the medical system is in
place to serve us. What else?
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Thank you for your help! You all amaze and inspire me.
Sincerely,
Karl Schwartz
President, Patients Against Lymphoma
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