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2019 Top-Rated Nonprofit

ICAN, International Cancer Advocacy Network

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Nonprofit Overview

Causes: Cancer, Health, Philanthropy, Private Independent Foundations, Technology

Mission: ICAN provides Personalized Medicine Cancer Case Management Programs, through its customized patient advocacy services, to Stage IV patients who urgently need new therapeutic options to consider. The organization specializes in complex and rare diagnoses, whether pediatric or adult cancers. ICAN, given years of experience with oncology issues and the anticancer drug pipeline, assists patients in the battle to extend life with high quality of life through physician referrals, cutting-edge information and advocacy services, clinical trials research, pre-approval access or "compassionate use" analysis, molecular profiling services, and palliative care program services. ICAN has been profiled in Newsweek based on the still enduring complete remission of one of its breast cancer patients and in Pharmaceutical Executive Magazine (where ICAN was viewed as the exemplar of cancer patient advocacy--out of 5000 organizations to choose from). ICAN has also been featured in the Robert A. Nagourney, M.D.'s pivotal book "Outliving Cancer" and is featured in the biography of anticancer drug discoverer G. Robert Pettit, PhD.

Results: ICAN is leading the international multi-stakeholder coalition, the Exon 20 Group, which consists of the world's leading thoracic oncologists and physician-scientists as well as patients, caregivers, pharmaceutical and biotech companies, academic medical center and commercial lab molecular pathologists, and exon 20-focused scientists. The Exon 20 Group represents patients from 28 countries. We are following each patient in the Group, insertion mutation by insertion mutation, and providing Molecular Tumor Board services (as we do for ICAN solid tumor patients with complex cases) at no charge to patients who are progressing on exon 20-specific agents. Because we are following patients so closely in not only exon 20 trials but other trials for our other solid tumor/blood cancer patients, we are able to provide study teams with important insights. We are also able to advise the biopharma community about protocol amendments and improved trial design in what all stakeholders understand to be a dynamic and challenging area. As a general matter regarding the "metrics" discussion, when one is dealing with individual cancer patients and their specific cases, the metrics are extending time to progression and disease-free survival in addition to patient-reported outcomes on management of side effects and quality of life issues. The metrics question becomes "compared to what?" since no cancer patient is like any other cancer patient. The one metric that counts at ICAN is an overwhelming number of our patients, given the countless accolades we have received over the past 23 years, testify to ICAN's pivotal assistance in making a critical difference in life prolongation and quality of life issues. On the metric of "Was there a stone left unturned in the patient's journey with cancer?", our ICAN patients and their families resoundingly answer "No" year after year.

Target demographics: Metastatic cancer patients, especially those with rare cancers or unusual presentations of commonly-diagnosed tumors or blood cancers

Direct beneficiaries per year: More than 600 patients and caregivers, including more than 60 patients from 17 countries dealing with a rare lung cancer mutation. Our legislative and policy work has helped patient-physician communications and assisted clarity in the biologics and biosimilars area as well as improved patient access and patient-physician-pharmacist communications for hundreds of thousands of patients across the United States. We also advise fellow patient advocates on advocate-health regulatory approval issues abroad.

Geographic areas served: All states in the U.S. as well as 54 countries

Programs: Personalized Cancer Care Navigation Programs Remission Coach Advocacy Programs Health Care Information Technology Initiatives Legislative Advocacy Programs Linda Jenckes Health Care Policy Program Clinical Trials Enrollment and Retention Tracking Program Exon 20 Group--for all solid tumors diagnosed with exon 20 insertions Named Programs (named by grateful patients or their families), please see http://www.askican.org/namedpat.html

Community Stories

210 Stories from Volunteers, Donors & Supporters

Advisor

Rating: 5

I have followed the work of Andrew Brown Jr. on behalf of ICAN for several years now. He has a tremendous span of ideas of ways to help cancer patient advocacy, and great enthusiasm for moving initiatives forward. He has a special interest in increasing participation in tests and treatments for people of color with regards to research, testing, and treatment, but simultaneously keeps his focus on the total population's exposure to cancer. He and I have discussed ways to work together to advance ICAN, and I am sorry to say that my negligence and distractions have kept us from realizing any of those efforts... up to now. I am continuing to try to find ways to work with ICAN and Mr. Brown.

Andrew J Brown J.

Client Served

Rating: 5

When I got my prostate cancer diagnosis in 2011, it was just another thing, another difficult addition in a time of marital dissolution, family illnesses, and financial chaos. I had no experience of my diagnosis as heartrending, as panic inducing; it came at a point where life seemed to pile on.

I knew to investigate. I knew to visit as many cancer specialists as possible and to question their recommendations, and to gather credible information about their particular forte.

I did so unto the point of being stuck. I was in paralysis-by-analysis: I had much information and had listened to each cancer specialist assure me that his/her approach was correct while telling me that other specialists couldn't offer me better. All of this information had me frozen in indecisiveness.

A dear friend had lost her husband to prostate cancer a few years before I received my diagnosis. It was only natural that I would share with her my travails. When I told her of all my due diligence and of my being stuck in place, she was dismayed at my immobility. She urged me to call ICAN. She was sure that ICAN could help me find a way forward, and if she was so certain, then that was then good enough for me.

Marcia picked up the phone and began my life saving advocacy. ICAN, which to me *IS* Marcia Horn, helped me out by giving context to all of the data I had gathered. ICAN helped me see that much of cancer care is siloed. Each specialist an expert in her/his universe, is to often isolated from other cancer care perspectives.

Marcia affirmed my research. She instructed me to see a medical oncologist, one who's concern would be the best treatment for my prostate cancer and not necessarily invested in a particular practice's treatment. I was stunned when she suggested me specific doctors here in the Hub of the medical world. She didn't leave me hanging!

Were it not for ICAN, well, I don't know and neither do I want to consider such for too long. Connecting with Marcia and ICAN was the tipping point at which surviving this disease became my reality.

ICAN's investment of its time and expertise in my life to extend, to save my life, has imbued my life with this goal: to help Black, LatinX, and other underserved cancer patient populations receive ICAN's loving, expert, invigorative cancer patient advocacy as have I.

Client Served

Rating: 5

I am so grateful to have found ICAN and the Exon 20 Group and to have gotten to know Marcia Horn, the executive director. Marcia is very informative and has been a great resource for finding leading edge clinical trial treatment options for rare types of cancer like mine. Thank goodness there are people like Marcia and organizations like ICAN and the Exon 20 Group who help cancer patients like me and are also advocating on our behalf.

Helen C.3

Client Served

Rating: 5





If my experience is any indication, this is an outstanding nonprofit. Diagnosed with stage 4 lung cancer in November, I was overwhelmed - as most cancer patients are. ICAN was recommended by a cancer survivor/advocate, and it was incredibly fortunate she did. Marcia at ICAN was instantly available and unbelievably helpful, guiding me to a Portland oncologist with a stellar reputation - someone I would never have known about; strongly cautioning me on a proposed treatment that did NOT suit my genetics, offering information and resources and helping me sort through a massive amount of information. In the months since, nothing has changed; ICAN is always informed, always helpful, always available. ICAN is truly worthy!






Client Served

Rating: 5

I am a Stage IV NSCLC EGFR exon 21 survivor since July of 2016. I was recently referred to Marcia Horn at ICAN through a survivor/friend from our local lung cancer support group. Marcia immediately responded to my e-mail and made herself available on a Sunday afternoon to answer my questions and provide me with valuable 'tips and resources' for my specific situation. She even sent a follow-up message the next day to provide me with potential treatment plans and miscellaneous additional things to discuss with my oncologist's visit later that week. Marcia is an excellent resource! She is brilliant, knowledgeable, compassionate, and tenacious. She has already had a tremendous impact on my awareness of potential future treatment plans, clinical trials, and resources to help me navigate this disease. Her positive approach and demeanor is refreshing and eases the anxiety associated with a cancer diagnosis. Everything about Marcia encapsulates what you would describe as 'the perfect cancer advocate'. I am grateful for Marcia Horn and ICAN. CThuney

Client Served

Rating: 5

I probably don't have much to add and echo the sentiment of many of those here who have had the privilege to get support from Marcia at ICAN.
I will say if you have a loved one or you yourself are recently diagnosed with stage 4 cancer then Marcia at ICAN is an excellent resource for your treatment. Not just to start but also ongoing, especially for clinical trials and the management of side effects. She has extensive knowledge of oncology treatments and a network of doctors running clinical trials she can make referrals and introductions. She will help with complex subjects regarding treatment options and is an excellent resource and sounding board.
She also works in the background with Doctors and drug companies to convince them to make their clinical trials available to those most in need, stage four patients.
I can't recommend her enough. This is not your normal service organization.

Client Served

Rating: 5

Words cannot begin to describe how grateful I am for Marcia Horn and the ICAN organization. When my otherwise very healthy and active mom was diagnosed with stage IV lung cancer my family felt scared and hopeless. Marcia has provided support and guidance through this very complex disease. She is responsive and makes herself available to talk or email when needed. My mom was recently hospitalized, when I emailed Marcia to let her know she called me right away. With her I have an advocate with many years of experience and resources walking through this journey with us. She also connected me with Carmi Fazio, RN who is an absolute angel! She also has many years of experience in the oncology world and very willing to help in any way she can. She makes herself available and very responsive to email. She shares her experience and has a way of easing our anxiety or concerns. I could not imagine my mom (and our family) fighting this cancer without their support!
With much gratitude,
Amy

Client Served

Rating: 5

Every organization should have a guardian angel like we have in Marcia Horn!!!!!! There are not enough words to show my family's appreciation. The resources and connections she has given us is unrivaled. We wouldn't be where are in this horrific journey without her and this org.

Client Served

Rating: 5

I can't begin to express the gratitude my family and I have for Marcia and ICAN. I am an She has not only been a great source of information, experience and insights, I firmly believe that the progress I have made is in part due to Marcia, her network and the work she does for ICAN. As is often the case, there are times throughout this journey that are more difficult than others - Marcia has a way of turning those difficult times into optimism and positivity. She has spent significant time speaking with me and my wife, and I know she does the same for as many patients as possible. Her success and the success of ICAN is that she is the ultimate connector, bringing together patients, clinicians, researchers, biotech and many others all have a common goal of eradicating cancer. I will continue to support Marcia, ICAN and the Exon 20 group in anyway that I possibly can.

1

Client Served

Rating: 5

We can't express enough gratitude to Marcia Horn and ICAN. Her deep and nuanced knowledge, and fierce advocacy have resulted in direct, life-giving results for my wife who is living with lung cancer. Beyond this, her warmth and kindness offer a ray of hope and comfort on this difficult path. Thank you, Marcia. Thank you ICAN.

Client Served

Rating: 5

There are not enough stars to give full credit to Marcia Horn and her work. Marcia has achieved legendary status among NSCLC clinicians, researchers and caregivers, bridging the gap between patients and access to promising treatment options. She is brilliant, compassionate, tireless and tenacious and continues to be a steadfast guiding light for so many of us in this fight. I personally credit my husband's current health status to Marcia's lightning-swift work in connecting us with a top specialist. To say that we do not know where we would be today without her is a gross understatement. She is a lifesaver in the truest sense of the word.

1

Client Served

Rating: 5

Wow. I don't know where to start. When my 54 year old brother was diagnosed with stage IV Lung Cancer it was surreal. One day he was totally healthy and the next day, he had lung cancer with bone mets. We felt like we were drowning, helpless. His wife found out about ICAN and Marcia Horn. She threw us a life raft, and has kept our family afloat since then. Connecting us to key people and providing resources and education.
I am beyond floored by her responsiveness. To be honest, I am not sure she is human because I don't see how one person can do what she does. But apparently she does. I can not think about this organization without tearing up. My level of gratitude is off the charts. Thank you Marcia and ICAN.
Julie Suesserman

1

Client Served

Rating: 5

I would also give this advocacy group at least 10 stars. Marcia Horn is a wealth of information enabling patients to have the latest knowledge and options and to have hope. She is quick to respond to any questions and takes the time and effort to help everyone find the best options for their particular situation.

1

Client Served

Rating: 5

I would give ICAN ten stars if I could. I can not adequately express how much I appreciate Marcia Horn’s advice and support. When the world seems darkest, Marcia is there to offer options and make everything seem more doable and survivable. I am a NSLC Exon 20 survivor and I don’t make treatment decisions without discussing them with Marcia. I honestly do not know anyone more knowledgeable than Marcia on Exon 20. She cares deeply about everyone suffering from this disease and seems to have unlimited time to help everyone as much as they need. She and her organization are the gold standard of cancer support organizations.

1

Professional with expertise in this field

Rating: 5

ICAN helps in so many ways. From helping patients get connected with the most useful treatment to connecting people with support groups to staying up on all the latest research - this is an incredibly valuable organization.

Professional with expertise in this field

Rating: 5

I am a Web researcher at ICAN,
Very thankful to my friend and my leader who gave me the opportunity to be involved in this great Organization. For me it combines both the volunteering work and research to help the community, develop my knowledge and career.
Thanks to the great help that ICAN provide for the late stage cancer patient.
I will keep helping out in this remarkable family.

Professional with expertise in this field

Rating: 5

I'm a Web Research Intern in ICAN for a year ago . It was a great opportunity for me to be a part of this excellent community.
My experience with this family exceeds my imagination either on the personality level or scientifically one.
It helps me a lot to read and know more about cancer especially the Lung Cancer.
Thanks for everyone in this marvelous organization.

Professional with expertise in this field

Rating: 5

I work in web research
Working with ICAN is my favorite part of the day which compine both medical research and volunteer work,
I had the chance to work with the most cooperative leader who lead me through every single step and reminding me of the value of charity.
In this team I never stop learning and developing myself.
My deepest thanks to all ICan family.

2

Client Served

Rating: 5

As I reflect on the impact Marcia Horn, President of ICAN, has had on my life, longevity, peace of mind and positivity, options, knowledge, access to resources and my overall health… I am honestly not sure it’s possible to reduce my feelings of profound gratitude to a couple of typed paragraphs. I truly stand in awe of Marcia Horn. She has an innate ability to understand a highly complex arena of cancer treatment options, studies, trials and results…. retains every single detail and then explains what is relevant to each patient… in terms they can easily comprehend! Her decades of experience in this field have proven invaluable to my team and me.

After being diagnosed with Stage IV NSCLC (EGFR exon 20 insertion) it became readily evident that this rare genetic mutation was vastly underserved and needed a spotlight and focus. After forming the Exon 20 Working Group, Marcia was instrumental in helping us ramp up participation on a worldwide level in a very short period of time. We now have brought together approximately 150 experts in the field, as well as every exon 20 insertion patient we can uncover. The spotlight that was needed is now shining bright thanks entirely to Marcia and her team.

Marcia Horn is a truly remarkable person and I am so blessed to call her my advocate.

-Kevin Hanlon

Mohamed Ahmed H.

Professional with expertise in this field

Rating: 5

I work as a web research at ICAN for several months. I learn more and more from this experience and I am very grateful to help patients suffering from cancer under this great umbrella.