2009 Look Ahead and Key Funding NeedsFirst Time VisitorsCoalition for Faster ProgressFinanciallyContact Your LegislatorsAdditional Methods

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Click this link to open this page in a Word Document for easier printing. Accelerate_Progress_2009_Milestones_and_Funding_Needs.doc


Looking ahead to 2009, here are a few of the milestones we are targeting:

  • Holding our inaugural Celebration for Life and bringing together many more local foundation partners to help build awareness and funds for both Accelerate Progress and the many excellent organizations helping patients now
  • Expanding the breadth of partners signed on to our Coalition for Faster Progress and will be presenting our “Tenets of Progress” document to new FDA leadership
  • Convening our first in-person meeting of our Scientific Advisory Board, which will take place at the annual ASCO meeting held in Orlando this year.  We piggyback off this meeting to save funds, paying only for room rental and refreshments since our advisors will already have paid for their travel and lodging for this event
  • Participating as a speaker at the 2009 Onco-Biotechnology Summit at the Northwestern Lurie Cancer Center in September of 2009
  • Finalizing organizational Platform Document to be used to inform national policy discussions
  • Initiating and complete first Accelerate Progress whitepaper to provide additional support and analysis of the need for major systemic improvements now
  • Adding additional partners for our “Acceleration Engine” project.  This project focuses on our expertise in accelerating the speed and quality of learning within research conducted by other organizations.  This is our “We don’t do the research you fund, we make the research you fund better” effort.
  • Creating specification for an “Open Journal of Progress” to create a peer-reviewed Journal that would publish what has historically been called “failed” research but the publication of which will significantly increase the rate of systemic learning and progress and adequately support researchers who create high-quality studies
  • Holding policy briefings for more staff of more than 50 members of Congress or other national policy leaders
  • Beginning state-level legislative and policy awareness building campaign to help drive national action
  • Expanding our Board of Directors and Advisory Boards to bring additional expertise, insights, and potential funding partners to our organization

To do this, we will significantly expand both our grassroots base of funders (everyone from $5 to $500) as well as create an institutional level of funders who can support us at higher levels.  The Celebration for Life, our symposia and briefings for national policymakers, travel for meetings with key policy leaders, our efforts to create a schematic for the Open Journal of Progress, and the expansion of “Acceleration Engine” collaborations to accelerate progress in research against cancer and other life-threatening diseases are anticipated to drive our most significant need for funds in 2009.  We expect these events to springboard awareness of our organization and the issues we’re fighting to new levels as well as to directly impact research for patients both short and longer-term.

A brief summary of those items listed above as driving our funding needs follows below.



The Celebration For Life

This will be a community-wide event to build awareness and raise funds for both Accelerate Progress and other local organizations doing great work in the support of patients’ needs.  We recognize that many people need to become aware of the continuing need for better policy choices and the development and use of better science to help us build a more efficient system of development and regulation to improve the speed at which we translate advances in the lab into advances for patients.  We also recognize that our community is a great place to start because, sadly, we’ve already lost a large number of wonderful members of all ages and from many different backgrounds.

We’ll also be allocating at least 50% of all the proceeds from this event to the other non-profit groups who might choose to attend and participate.  That amount, then, will be divided evenly amongst those groups, so if five of them participate, each will get 10% of the total proceeds, etc.  Given the difficult economic times, it seemed a good way to reach a larger audience to build awareness of the many common barriers to progress faced by patients, their families, the doctors who treat them, etc.  Also, each organization would have the opportunity to tell their own story and help reach this audience of community members concerned about such issues and provide any handouts or other materials they bring along. 

We see it as a great way to bring together the many groups who recognize common barriers to faster, better progress against cancer and the need to continue devoting ourselves to working with urgency on behalf of patients in need.  Increasing awareness by bringing together multiple groups with high degrees of affinity seems like a perfect opportunity in this busy time where we could introduce folks to a lot of good people and organizations all at one time in a positive atmosphere celebrating life and progress.

Expected Gross Costs of Event: $29,000


Symposia/Briefings for National Policymakers

These are crucial to informing national health policy discussions, allowing us an opportunity to make our experts available for presentation and discussion via panels and other keynote speaking opportunities.  It is our goal to bring together over a single day as many staff and principals involved in national health policy implementation as possible.  The breadth of attendance at the meeting drives both costs and effectiveness of the events.  If we are able to hold more targeted briefings on a more frequent basis, which is our general preference to maximize quality time with staffers and other policy personnel, we will, but to make the best use of initial funding, we are targeting two briefing events for 2009.  The first event will be a typical legislative briefing on health policy and the second will be a health policy symposium targeting additional policy leaders, on which we anticipate collaborating with other national policy organizations. 

Total expected Accelerate Progress contribution to briefing/symposium cost, including meeting space rental, food, and travel reimbursements: $19,000

Travel for meetings with key policymakers and other strategic leaders as well as major fundraising trips

This budget allows us to maximize our time with national policy leaders.  Each trip is subjected to rigorous cost/benefit analysis and price conscious websites (Priceline, Hotwire, etc.) are used as often as possible to maximize value per trip.  Most travel is undertaken by our Executive Director, but it will be necessary for certain key meetings to reimburse other volunteer members of our Scientific or Policy Advisory Boards for their travel expenses.  Bringing Dr. Phil Schein or Dr. Scott Gottlieb or Dr. Bruce Bloom or Dr. Dave Alberts, etc., etc. to a meeting with a key policymaker increases the effectiveness of these meetings dramatically, so when schedules allow and the meeting is with high-level policy personnel, we will endeavor to coordinate for these advisors to attend.  The less we need to travel for direct fundraising, the more time and budget money we have for meetings with national policymakers.

Total expected travel budget in 2009 (including rental of space at ASCO meeting for Accelerate Progress’ Scientific Advisory Board meeting):  $22,000

Creation of Schematic for Open Journal of Progress

In accordance with World Health Organization (“WHO”) findings, as much completed and even abandoned research as possible should be published and publicly available for researchers across the globe to use to inform their own efforts.  Society, however, does not properly laud those who ‘fail’ even though these learning steps are necessary to inform future successes.  An open-access, peer-reviewed journal is needed, for instance, in oncology to house all such studies and help inform international research efforts.  Publishing these efforts will speed the path of learning by eliminating unintended research redundancy, informing future research hypotheses and real-time adjustments to in-progress research, and providing a necessary positive avenue for researchers to secure the necessary peer-reviewed journal publications to support their own careers. 

Total expected costs to create schematic and provide background research to support to grant proposal for Open Journal of Progress in Oncology: $6,000

Expansion of “Acceleration Engine” Collaborations

With these collaborations, we will act as an ‘Acceleration Engine’ for our collaborative partners (who will typically be research-focused foundations like Partnership For Cures, our first such collaborative partner) and improve the rate of learning by connecting researchers and philanthropists to our world-class scientific advisory board and helping design better trial protocols that include the use of adaptive design elements and advanced statistical analyses when appropriate.

Many of our collaborative partners are funding researchers focused on driving both short and longer-term benefits for patients.  Through their collaboration with Accelerate Progress, we can provide their researchers with powerful new tools and methods to help them design research that will reach patients faster and provide more robust results at a lower cost.  To expand the number of protocols we are able to review and improve in a timely manner, we expect to bring on one Statistical and Trial Protocol Support staffer.

Total expected Accelerate Progress contribution to costs in support of two additional “Acceleration Engine” collaborations: $70,000

Total Expected Key 2009 Costs to Accelerate Progress: $146,000

Donations can be made for specific projects and events listed above, new fundable projects not listed but desired by a donor and within our scope, organizational operating support, or endowment building.  or use the buttons below to donate either via Paypal or via JustGive.org (which also allows you to set up recurring donations, etc.) or just click this link JustGive.org Donation Page for Accelerate Progress for our donations page at JustGive.org.







This page is under “How You Can Help” because it’s also a great page to send to people you know if you think they might want to know more about Accelerate Progress.

Who are we?

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Accelerate Progress is a recognized 501(c)3 public charity created to bring together the many groups necessary to assess, address, and improve the systems we use to develop, regulate, and use new therapies for patients fighting cancer and other life-threatening diseases. Our stated purpose is “to improve the rate at which new and clinically important therapeutic discoveries are translated into advancements for the management or cure of life threatening diseases, and to assure patient access to these treatments.”

In other words, we are working for faster progress, more options for patients, and a better system for everyone to support progress and options because that equals less suffering and death.

Why do we need Accelerate Progress?

The Short Answer

  • 12-15 years is too long to wait for a new treatment if you’ve been diagnosed with cancer or another life-threatening disease.
  • More than $1 billion is too much to have to spend to develop this treatment.
  • The system can be improved so that it takes less time and costs less money to develop these therapies, while we actually increase the level of scientific rigor and speed our learning about new therapies and who will benefit most from them.
  • There are many great organizations funding research against these terrible diseases.
  • Our work makes their research dollars go further and, if you support them, helps them get more from your donation.
  • Their rate of progress from research is limited not by their scientific talents, but by the efficiency of the system around them.
  • They know research and that’s what they do.
  • We know policy and how to use better policy and better science to accelerate progress and that’s what we do.
  • Help us accelerate progress so we can help them deliver those new and better options to patients in need more quickly and economically.

The Longer Answer

What if you or a member of your family were diagnosed with cancer or another life-threatening disease?  Do you have 12-15 years to wait for a new treatment to be discovered and make its way through the translation, development, and regulatory review maze before finally reaching your doctor’s “shelf” as an option for your treatment?  Not likely.  Will you be able to raise the more than $1 billion it costs to take a new treatment from discovery to the “shelf” at the pharmacy?  More than 500,000 American men, women, and chidlren will die of cancer alone in 2008.  Given that the average late-stage cancer patient’s life expectancy is 12-18 months, there is no time to lose once you’re diagnosed.  There is no time for inefficient regulations that hamper collaboration and accelerated progress, misaligned incentives that stymie development efforts, and other common barriers to progress that keep us from translating our amazing advances in understanding the biology of these diseases into available treatment options for you and your doctor to use in your fight for life.

Thinking you might be able to get access to a new promising but experimental treatment that could save your life?  Sounds good, but the odds are against it, not because the treatments don’t exist, but because very, VERY few can get access to them.  Roughly 2-3% of all patients get enrolled into clinical trials for promising new treatments, for a variety of reasons, but often because some aspect of their disease (where it’s located, symptoms it has caused, etc.) make them ineligible.  Ask anyone who’s had a loved one or close friend fighting cancer try to get into a clinical trial.  It’s almost impossible and usually ends with a doctor uttering those awful, sickening words, “There is nothing more that we can offer you but some medication to ease your pain in your final days…” Read the recent article by one of our Scientific Advisors, Dr. Emil Freireich, where he uses two case studies of patients he’s treated to give real world examples of why getting patients access to these promising, safe, and effective therapies quickly and efficiently should be our goal.  The two individuals Dr. Freireich discusses lived 23 years and more than 10 years after hearing that fateful phrase and being told they should “get their affairs in order” and had no options.  How did they do it?  They were in that very fortunate 2-3% who manage to get enrolled.  Wouldn’t it be better if more than 2-3% of patients could benefit, could actually get access to something that might help them fight for their lives and win? 

In 2008 nearly 1.5 million people in the United States will be newly diagnosed with cancer.  Almost one in every two men and one in three women will be diagnosed with cancer in their lifetime.  The National Institutes of Health estimate overall costs of cancer (including costs of the treatments, costs of hospital care, costs of support and fighting side effects, etc.) in 2007 at a staggering $219.2 billion.  The very real costs to your family of losing a loved one is not broken out by NIH, but ask anyone who’s lost one and their faces alone will tell how costly it was.  Our inefficient systems contribute to development times for these promising and potentially lifesaving new options that regularly exceed twelve years per drug and often require spending of more than $1 billion per drug developed. How many innocents have to die before we recognize that the system must be changed?

At Accelerate Progress, we’re focused on improving the rate at which new and clinically important therapeutic discoveries are translated into advancements for the management or cure of life threatening diseases, and to assure patient access to these treatments.  In other words, the improvements we’re pushing for would decrease the time necessary to bring new treatments to patients and decrease the costs of developing those new treatments.  Decreasing both of these allows companies to develop more options, which increases competition and provides for better personalization of treatment regimes for patients, and also supports development of options against more rare diseases than previously possible due to poor economics, further benefiting public health.  We will accomplish this while maintaining and even strengthening the scientific rigor of study by using better science and tools available now or that can be made available in the near future by providing leadership and support for them now. 

How will we Accelerate Progress?

Accelerate Progress centers our activities around two primary areas:

1) Policy:  At Accelerate Progress we use the term ‘action tank’ because we maintain a focus on not just generating great policy ideas, but actually translating those into actionable, implementable policy items and then taking action to help put them in place for broad use and adoption.  Current focus areas for policy research are:  diagnostics, trial design and analysis, regulatory, and other.

2) Key “Accelerating Science” Research: We are creating collaborations with leading academic and research institutions to advance work on adaptive trial designs, Bayesian statistical analyses, biomarker research and validation, diagnostic assay creation/validation, improved data and tissue collection and entry, and other areas that are not currently well-served by for profit organizations often due to lack of incentives.

Support for Accelerate Progress

In order to maintain our independent voice and allow us to act as an acceleration engine drawing from multiple constituences but beholden to none, we do not take funding from pharmaceutical or biotechnology companies developing therapies against life-threatening diseases.  With that in mind, a key to success for Accelerate Progress is to rapidly develop a broad funding base of partners (individuals and organizations) so that we can aggressively pursue these research opportunities that are, without question, available but waiting for someone to drive them, while also supporting the organizational policy work that is far less costly, but no less important.  Click here to see our 2009 expected milestones and funding support goals.

In summary, Accelerate Progress will lead by example and, through both policy and directing key scientific research in the areas described above, drive the changes necessary to truly accelerate our progress against cancer and other life-threatening diseases.

Examples of Accelerating Progress

Accelerate Progress is bringing together a Coalition for Faster Progress, a network of organizations and individuals committed to working together to overcome the common barriers to progress that we all recognize and face.  It is true that each disease brings with it a series of specific issues and hurdles to progress, but we recognize that no matter the size, scale, or disease focus of an organization, many of the barriers to progress are shared with all others in the system.  To bring attention to these common barriers and raise a common voice to call for improvements in the systems’ areas slowing progress, we invite additional organizations to and join our Coalition for Faster Progress. 
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Where appropriate with our collaborative partners, we will offer trial design improvement suggestions (adding an adaptive design element to a trial, for instance, or creating a Bayesian statistical analysis plan for the trial) designed to accelerate the speed of the learning loop and allowing researchers to actually learn more and faster, delivering both faster improvements in new therapeutics (winners get accelerated, less efficacious or overly toxic offerings get pushed out more quickly as well) as well as better return on investment, including the reduction in redundant research efforts.  All data gathered will be entered into a publicly available database and available to be shared to help researchers everywhere make more and faster progress against diseases like cancer. 

Our world-class scientific advisors have already done an incredible amount to begin to foster this network of efficiency between disciplinary groups and between multiple constituents or stakeholders in the systems we use to discover, develop, translate, regulate, and use new therapies.  There is still much more to be done.  For those who support other research organizations, think of our role this way, “We don’t do a lot of the research you fund. We make a lot of the research you fund better.” Even in many of the most forward-thinking research organizations in the industry there is always room for evaluation, improvement, and increased network efficiency.  There will always be room until we have all these diseases cured.  Also, the fact that we’re focusing on improving policy, aimed at increasing systems efficiencies (with the broad system defined as starting with discovery and ending with patient/doctor access to a therapy and sub-systems defined as discovery, development, regulation, and use of those therapeutic agents), we have a strong second way to improve the effectiveness of the research you fund, because everyone in the system will benefit from more efficient and better designed systems and regulations. 

Putting experts like economist Alex Tabarrok and cancer researchers and academics like Phil Schein and practicing physicians and regulatory leaders like Scott Gottlieb (former Deputy Commissioner of the FDA) together with other key people will give us the ability to translate the immense scientific skill our advisory board possesses (and their strong ideas about how to improve those systems) into strong policy that is both actionable and implementable, so we move from a ‘policy tank’ approach to an ‘action tank’ follow through.

Who is it all for?

Our work is meant to benefit the public health.  That means current patients, future patients, and all of the other individuals and groups that work within or are affected by the systems we use to discover new therapeutics, translate those early discoveries into clinical candidates, push development of those candidates via clinical trials and progress, move the most safe and effective of those through the regulatory review and approval process, and ensure broad patient access to these new promising and potentially lifesaving therapeutics. 

A copy of the document we recently submitted to President-Elect Obama’s Transition team on health and FDA issues can be found here and will continue to be updated and built upon with further input from our expert team.  Sign up for our newsletter to be kept up to date and/or for more information or comment.

Accelerate Progress recognizes that in these systems, the opposite of “efficient” is not “inefficient” but “deadly” because delays caused by inefficiency contribute directly to suffering and death.  We know our systems can be improved, we know how to do it, and we need your help to make it happen.  Please take a step to help whether for yourself, to honor the memory of another, or to improve the future for those yet to come.  image

We are a recognized 501(c)3 public charity under IRS regulations, so your donations (be they cash, stock, or other) are tax-deductible to the extent provided for by law.  We will provide a receipt for tax purposes after processing of your donation.  Check with your tax advisor for additional information. 

If you would prefer to donate via check or other method, please You can use the buttons below to donate either via Paypal or via JustGive.org (which also allows you to set up recurring donations, etc.) or just click this link JustGive.org Donation Page for Accelerate Progress for our donations page at JustGive.org.








Also, do your shopping at iGive and help support Accelerate Progress!  iGive brings together a lot of leading retailers, including Amazon, Coldwater Creek, Land’s End, Patagonia, Lane Bryant, Overstock.com, and so many more, and if you shop from their iGive website to these retailers, Accelerate Progress receives a small percentage (from about 2-20%, averages around 3%) of your purchase and you don’t have to do anything else.  Just register at iGive and shop away!  Click the link below and it will start you on your way, knowing that Accelerate Progress sent you! 

http://www.iGive.com/AccelerateProgress

iGive.com

Accelerate Progress is bringing together a Coalition for Faster Progress, a network of organizations and individuals committed to working together to overcome the common barriers to progress that we all recognize and face.  It is true that each disease brings with it a series of specific issues and hurdles to progress, but we recognize that no matter the size, scale, or disease focus of an organization, many of the barriers to progress are shared with all others in the system.  To bring attention to these common barriers and raise a common voice to call for improvements in the systems’ areas slowing progress, we invite additional organizations to and join our Coalition for Faster Progress. 

Becoming a Patron of Progress

Accelerate Progress does not accept donations from biotechnology, pharmaceutical, and related medical device makers who develop new therapies or devices to fight life-threatening diseases. 

This means we need to find financial support from a broad group of individuals, foundations, and other groups who recognize that we must take action now to Accelerate Progress for this generation and future generations to benefit.  Your support helps us in our fight to increase research to make discovery, development, and use of safe and effective new treatments more efficient (translated: faster and less costly meaning more choices, better choices, fewer dollars spent). and fund research to discover better ways to design and evaluate clinical research trials (translated: discovering ways to get from ‘bench to bedside’ faster for promising and potentially lifesaving therapies).  All levels of supporters will be included in our “Patrons of Progress” circle.  There is no minimum donation size for this support level, every bit helps.  Suggested minimum donations for those considering a “Tribute” are $10 to cover additional costs associated with that section.

Becoming a Founding Patron

In addition to the “Patrons of Progress”, we are offering the opportunity to be recognized as a “Founding Patron” for a minimum donation of $500.  Founding Patrons will be recognized on the site with whatever inscription they may choose. 

How to Make a Donation to Accelerate Progress

Financial donations can be made via check or using credit card or bank account via Paypal using the button below.  These donations may be made in your own name or ‘in memory of’ and will be represented accordingly in your thank you card and receipt.  We can also work with you to set up future bequests, take donations of stock or other items to be donated for auction, and/or create a monthly auto-deducting contribution to Accelerate Progress. 

Donations can be made for specific purposes (i.e. funding our direct research into advanced trial designs, better statistical analyses, and biomarkers/diagnostics for instance) or for unrestricted purposes.  Unrestricted funds might be used, for instance, to cover travel expenses for a trip to D.C. to provide a Congressional briefing on the needs of patients fighting life-threatening disease.  We are also working to build an endowment to cover ongoing operating expenses for the period between now and the final analysis of our progress against the IRCI 2018 plan.  Once our endowment is set, a regular withdrawal from the foundation (primarily from investment returns and principal only as needed per the plan) will cover the annual operating expenses (travel, etc.) of the organization and 100% of future funds raised will go directly to funding primary research efforts across our mission (diagnostics, regulatory research, trial design research, additional exploration on relevant high-priority topics, etc.).

The Paypal “Donate” button below will allow you to use a checking account or credit card to donate directly to Accelerate Progress. 

We are a recognized 501(c)3 public charity under IRS regulations, so your donations (be they cash, stock, or other) are tax-deductible to the extent provided for by law.  We will provide a receipt for tax purposes after processing of your donation.  Check with your tax advisor for additional information. 

If you would prefer to donate via check or other method, please






Also, do your shopping at iGive and help support Accelerate Progress!  iGive brings together a lot of leading retailers, including Amazon, Coldwater Creek, Land’s End, Patagonia, Lane Bryant, Overstock.com, and so many more, and if you shop from their iGive website to these retailers, Accelerate Progress receives a small percentage (from about 2-20%, averages around 3%) of your purchase and you don’t have to do anything else.  Just register at iGive and shop away!  Click the link below and it will start you on your way, knowing that Accelerate Progress sent you! 

http://www.iGive.com/AccelerateProgress

iGive.com

If you have a great contact in a state legislature or in Congress, please let us know, we’d love to meet with them.  If you don’t have a contact yet, call your local Representative or Senator’s office and ask who their Health Legislative Assistant (Health LA for short) is.  Introduce yourself, explain that you want them to help Accelerate Progress against cancer and other life-threatening diseases.  Build a relationship with them.  Introduce us if you prefer, we’d be happy to make the introduction as well, but your presence and role is crucial because you are the concerned voter and constituent that they serve so the more of you there are in each district, the more we will all be able to Accelerate Progress.  We believe that education and information is the key to a broad non-partisan, fair, and appropriate response to the need for accelerating progress against these difficult diseases. 

For more information about finding and contacting your elected officials, see our Links page on Congress.org found here.

Want to set up a local neighborhood bake sale to help Accelerate Progress?  Thinking about writing an Op-Ed for your local newspaper?  Going to an alumni reunion at your college and know some well-connected folks are going to be there?  Let us know what you have on your mind that would help Accelerate Progress.  We’ll soon have some easy to download PDF one-sheets and other reference materials to help you tell the Accelerate Progress story and encourage others to get involved too, but feel free to email the Director at with requests and thoughts.