FAQ @ ALK Positive Research
FAQ about ALK Positive Research
What is ALK-positive lung cancer?
“ALK-positive” is a type of lung cancer involving a mutation of one type of gene, Anaplastic Lymphoma Kinase. All lung cancers are extremely serious, and more people die of lung cancer than the next three types (colon, breast, and prostate cancer) combined. However, ALK-positive lung cancer is uniquely challenging as the cause and cure are both very elusive.
Who is susceptible to getting ALK-positive lung cancer?
Anyone can get ALK-positive lung cancer. Many types of lung cancer are associated with known factors such as smoking, diet, or family history. ALK-positive lung cancer is not known to be related to any of these factors.
About half of all ALK-positive lung cancer patients were first diagnosed under age 50.
This can be an especially cruel diagnosis for young adults who are affected in their child-raising years.
What is the organization ALK Positive?
· ALK Positive is a partnership of ALK-positive lung cancer patients and caregivers, founded in 2015.
· ALK Positive has more than 1900 members from 50+ countries and five continents. You can learn more about ALK Positive at www.alkpositive.org.
Why does ALK Positive raise money to fund ALK-positive lung cancer research?
· Unfortunately, like all lung cancers, ALK-positive lung cancer is deeply underfunded.
· Before groundbreaking research, patients could expect to live only a few months. Life expectancy for ALK-positive patients is now up to a median of six years.
· Sadly, patients diagnosed at an advanced stage still have a cure rate of zero.
How does ALK-Positive support effective research?
ALK Positive selects the research that has the BEST chance of improving our life expectancy and quality of life. ALK-Positive has an excellent system of selecting impactful research projects:
Scientists provide unbiased opinions on the potential of different research proposals, with stringent criteria equivalent to those required for NIH submissions.
ALK Positive has an internal Research Review Panel of five dedicated individuals with deep medical backgrounds (all are ALK patients or caregivers). Some have even conducted lung cancer grant proposal reviews for the Department of Defense.
ALK Positive has external experts review each research project to assure that the budget is realistic.
ALK Positive employs a structured scoring and review system to select the best research project proposals. Frequent project reporting is required for continued funding.
ALK Positive can select from many submitted proposals, including those from leading academic institutions as MGH, UCHealth, Vanderbilt, MD Anderson, and others.
What ALK-positive lung cancer research projects does ALK Positive already have underway?
You can read about the first three ALK Positive funded research projects here: lungevity.org/...
· These three projects were selected in 2018 from 14 applications by the ALK Positive Research Review Panel (RRP) members and external scientists. Each two-year project has a total budget of $200,000.
· The scientists conducting the research are world leaders in ALK; Dr. Justin Gainor from MGH, Dr Rafael Nemenoff from University of Colorado- UCHealth, Dr. Mark Awad from Dana Farber, Boston.
· The RRP and scientists have completed their second progress report review. At the halfway mark, the projects are all progressing very well. All had funding approved for the next six-month period.
· Dr Gainor’s research is so promising that extra funding ($100,000) was approved for a “booster” to boost it towards clinical trials!
· Dr. Mark Awad is performing research investigating ALK vaccines https://lungevity.org/news-blogs...
· These three projects and the “booster” are all fully funded ($700,000 total), and should be completed in mid-2020. They are funded through the ALK Positive/ LUNGevity Research Fund.
What is the 2019 ALK research project being funded by ALK Positive & GO2?
· The ALK Positive Research Review Panel has identified exciting research proposed by leading ALK researchers Dr. Christine Lovly and Dr. Trever Bivona. They will be collaborating on a research project looking to identify off-label drugs to be used in combination with existing ALK TKI treatments to extend the time that ALK-positive patients survive. This project should start early 2020.
· The expected project budget is $500,000. This was fully funded in just one month by ALK Positive fundraising! This project will be funded through our ALK Positive/ GO2 Research Fund and administered by the GO2 Lung Cancer Foundation
if the 2019 ALK Positive/ GO2 project is fully funded, what’s next?
· ALK Positive is now pre-fundraising for a new research project to be commenced around mid-2020. The research may even include a phase 1 clinical trial!
· Thanks to some amazing donors, in December 2019 a 100% match is being offered on the first $200,000 raised!
· This project will be funded through both our ALK Positive/ LUNGevity Fund and ALK Positive / GO2 Fund, and administered with the LUNGevity Foundation.
· The goal is to raise $1,000,000 by June 2020.
I want to help! How can I donate?
1.To donate with a credit card go to www.alkpositive.org or https://www.supportalcf.org/alk and hit the DONATE button!
2.If you prefer to send a check, make it out to “GO2 Foundation” write a memo on the check "for ALK Positive", and mail to:
GO2 Foundation for Lung Cancer
1700 K St NW #660
Washington DC 20006
3.Or, if you want to conduct a wire transfer, please email dbeltramo@go2foundation.org or call 1-800-298-2436
All donations will be matched 100% in December up to the first $200,000. If you want to donate $50,000 or more, please first contact Tina Casebeer, Fundraising Chair at fundraising@alkpositive.org or Gina Hollenbeck, President at president@alkpositive.org.
Are donations tax-deductible?
· Yes (to the full extent of the tax laws)- LUNGevity and GO2 both have 501(c)(3) status
· LUNGevity and GO2 Foundation for Lung Cancer both have the Charity Navigator top rating (4 stars)
Can the company that I work for donate to the ALK Positive/GO2 Research Fund?
· Absolutely! Feel free to share your story with your company (and share this information sheet if you wish) and ask them if they will donate or match your donation.
· Their donation will also be eligible for the 100% match from the donor challenges in December 2019!
· Their donation will also be tax deductible (to the full extent of the tax laws).
Can I donate if I live outside the USA?
· Yes! Donations will not be tax-deductible for non-USA taxpayers, but the research will benefit ALK-positive patients worldwide