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2017 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 17 countries. We are following each patient in the Group, insertion sequence by insertion sequence, 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 22 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

186 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

ICAN is a fantastic resource for patients and a topnotch advocacy organization. I have referred patients to ICAN and they go above and beyond to assist patients in need of resources as they struggle with a cancer diagnosis regardless of the location of the patient. They are well versed in the latest research and clinical trials. They have resources far and wide around the country through their strong relationships with patient volunteers as well as medical and academic contacts. I will continue to refer patients in need to ICAN.

Professional with expertise in this field

Rating: 5

Amazing organization. I referred friend who had Stage 3 lung cancer. This is precision medicine as it was intended to be.

General Member of the Public

Rating: 5

This is a unique and world-class nonprofit which does what (to my knowledge) no other nonprofit world-wide does on behalf of the most critically-ill cancer patients. The tributes to this organization from patients and their families are endless, employing expressions like "you saved my life" and "we will never be able to adequately thank you." Yet ICAN remains scrupulously objective, realistic, and science-based in its approach to helping patients, doing what no doctor does or can do: seek out and advocate the best cancer care and clinical trials available in the entire arena of cancer therapies. The fact that this organization is international and that it charges nothing for its services is truly miraculous.

Volunteer

Rating: 5

ICAN allows for working alongside renowned experts at the frontier of today's medicine. It is my conviction that ICAN's detailed letter of recommendation about me, written by ICAN's CEO Marcia Horn and ICAN's Director of Research Services Regina Marie Klopfer, enabled my admission into my first-choice graduate program. IUPUI (Indiana University-Purdue University Indianapolis) offers translational bioinformatics and other cutting-edge research areas in close association with the Indiana University School of Medicine, and I look forward to contributing what I learned under ICAN as a Health Disparities Research Intern.

I greatly enjoyed my time as an intern and Research Team Leader at ICAN. It was most productive, and the Research Teams are very well managed.

Professional with expertise in this field

Rating: 5

The staff is dedicated, patient centered, and continuously provides "above and beyond" individualized service.

Client Served

Rating: 5

There are simply not enough stars to rate International Cancer Advocacy Network (ICAN) as high as they should be rated! I am an elderly, low-income grandmother who has been recently diagnosed with Stage IV colon cancer. It was so, so scary at first. My experience with ICAN has been critical, life-saving, inspiring, motivating, empowering, and amazing! The ICAN advisors have helped me take charge of my Stage IV colon cancer diagnosis. ICAN has a tremendous knowledge base of cutting-edge advanced genetic and other cancer research that even the top-class practitioners in the United States do not *yet* use routinely with all their patients. ICAN has worked tirelessly, promptly, and caringly to help me 1) understand my diagnosis; 2) find the absolute world-class top doctors near my home; 3) introduced me and the doctors to advanced research to personalize my care; 4) supported me *every step* of the way with advice, interpretation of doctor's recommendations, and guidance; 5) provided inspirational, positive motivation to me. I am elated to report that, despite my very serious stage of cancer, and my elderly, low-income status with no other "connections" in the medical world except ICAN, I am making great progress towards curing this cancer! ICAN has helped me access the best treatment possible with their tremendous knowledge base of research and has helped me feel confident that I am getting the best cancer care available today in the United States -- for instance, the advanced genetic and protein profiling that ICAN has introduced to me and to my nationally-recognized top cancer doctors at one of our country's top cancer centers, would not have happened without ICAN's help. I only feel bad that I do not have the financial resources to help ICAN as much as they have helped me. I thank every and any person involved with ICAN -- volunteers, researchers, doctors, employees, and financial donors -- for giving me hope and changing my life. I am so confident in their value that I have been spreading the word about ICAN to other cancer patients I meet, including, tragically, even very young cancer patients. ICAN can make a difference, and I will also support them in any possible way that *I-CAN!*

Volunteer

Rating: 5

ICAN is proving to be a leader in the fight against cancer. Working with patients to battle their unique challenges, the International Cancer Advocacy Network has helped countless families take on the task.

Volunteer

Rating: 5

Over the past 6 years, I have had the pleasure of volunteering with ICAN and I can honestly say it is a wonderful experience. As Director of Research Services, I have the honor of working with some of the finest and most dedicated individuals around. Without Andrew Young (our Director of HR), Michele Ouellet (our Citation Editor), all of our extraordinary Research Team Leaders and as well as our truly committed Web Research…I can honestly we could never accomplish our goals so each and every one of them is truly appreciated on so many levels. ICAN is a truly amazing organization and it is truly needed in this world.

Client Served

Rating: 5

I have known ICAN for more than 15 years and can speak of their utmost integrity, efficacy and making an enormous difference in the patients and families who are facing cancer challenges. Not only do they have some of the best and up-to-date information but they continually reach out to those fighting this dreadful disease to help them navigate and understand the treatments and potentials to win their battles.

I can without hesitation endorse and encourage this organization as a 'best of the best' non-profits. I could not recommend them more highly.

shapiro

Client Served

Rating: 5

We have known Marcia and seen her work tirelessly with ICANN from the beginning. She has helped many of our family members when we have needed assistance in the hospital or recommendations for the very best Dr. for any situation. She helped us find the very best Pediatric GI Specialist when our son was diagnosed with EE, she helped my sister when she was in the hospital in intensive care for Sepsis, helped our friend find a top fertility specialists in Phoenix and the list goes on. She is truly amazing and ICANN is essential for continuing to help people with their medical care with Cancer and many other medical situations. Marcia and ICANN are the first place we turn to when we need help and assistance with our medical needs. There truly are no words for how helpful they have been. Thank you Marcia.

Previous Stories

Client Served

Rating: 5

ICAN and Marcia Horn have been the first place our family has turned to in several critical health situations. Marcia is amazing with her knowledge of Dr's and specialists for every medical situation that we have had to deal with. She has helped our son find one of the best Pedicatric Gastrointerologist in the nation to help him with his medical condition, pointed us in right direction when our Father was in a burn unit from an explotion, was one of the first to realize and help us when a family member was in intensive care and had sepsis and helped us in so many other instances. We can't say enough about ICAN and personally don't know what we would have done without Marcia and her kindness to always help us. She has been there for us and helped us at any hour and we feel blessed to have someone like Marcia and ICAN that we can turn to. Paula Shapiro

Volunteer

Rating: 5

Truly amazing organization! I contacted ICAN for a friend of mine in China. Marcia and Scott provided valuable information and endless consultations. They are very sensitive to cultural barriers and practice differences and was able to put together a panel of experts from US and China to help my friend! I am so amazed by ICAN's powerful network, from cancer researchers, clinicians, to patient advocates. And it is this network of selfless, passionate, and knowledgeable experts who provide hope to my friend that the family and I are forever grateful.

Client Served

Rating: 5

After our world was turned up-side-down with my husbands cancer diagnosis we didn't know where to turn. An acquaintance mentioned ICAN. The information, support, service and attention we received far exceeded any expectations. Marcia responded after hours and on weekends to get us information and help us navigate our way through the confusion. Phenomenal organization!!! Incredible woman. Thank you from the bottom of our hearts!!!
Forever Grateful, the Milazzo Family

Donor

Rating: 5

As a volunteer in a local "Wig Boutique" I am in contact with cancer patients on a daily basis. Many of them have talked positively about their ICAN experience and specifically mentioned Sherry Weinstein as a fabulous resource for them. Her compassion, patience and persistence in assisting them in their quests for knowledge have comforted them and led them to treatments not before known to them. I have personally spoken to her and feel that her representation as Chairman of the Board of Trustees of ICAN is exemplary and that this organization goes above and beyond the basics at all times in order to aid those in need. We all need to support ICAN with donations so they can continue their inspirational work.

Client Served

Rating: 5

When my father-in-law was diagnosed with cancer several years ago, we learned about ICAN from some friends who referred us to Sherry Weinstein. She was wonderful at putting us in contact with the people at ICAN who were able to advise us on how to understand what was happening and what dad's options were. I have contributed to them and would recommend that others support ICAN's efforts.

Client Served

Rating: 5

Marcia Horn and ICAN work tirelessly in an effort to serve those in need. The patients are always put first and Marcia answers all inquiries almost immediately. She and her staff have an amazing amount of information at their fingertips, and can help direct patients very quickly to those that can help them. My husband and I are very grateful to ICAN and Marcia and we are in wonder of all they can do as advocates. They deserve and need more funding so they can reach more people that find themselves needing answers and direction at a time when all seems so frightening and confusing. Marcia and her team are just incredible.

Client Served

Rating: 5

This is what is needed: a place where cancer patients are the "important". Marcia Horn and ICAN are there for you. Present, helping you, advising you, and you feel their help is real, efficient, effective, and caring. I can't and I don't want to imagine this "journey" without her.

Professional with expertise in this field

Rating: 5

I have been aware of ICAN for only the past few months, but I have been truly amazed by the quality and extent of the services this organization provides to cancer patients and their care givers/families. Marcia Horn is a tireless patient advocate who goes far beyond the extra yard to ensure that the patients who contact ICAN get not only the best information regarding treatment options for their particular cancer, but also assist them getting access to the best physicans to treat them. ICAN also is working hard on various legislative fronts to ensure patient safety by ensuring that patients and their physicians will know what medication they are receiving as new biosimilar medications begin arriving on the market in the future for the treament of various cancers. ICAN is also working to obtain further governmental funding for research on rare cancers such as sarcomas. I am glad that my wife introduced me to ICAN and look forward to supporting and working with this organization in the future.

Volunteer

Rating: 5

I have been both a volunteer and a seeker of help from ICAN, International Cancer Advocacy Network for about a year and a half. I have been more than impressed with the one-on-one, professional, and highly-educated information, resources, and referrals provided -- and provided now, when I needed it. No waiting rooms at ICAN. You move to the front of the line immediately.

Marcia K. Horn is a modern day Mother Theresa. I don’t know how she has enough hours in the day to respond and interact so personally with each patient or family member, friend, or caregiver who comes to ICAN for assistance.

I feel honored to have been accepted as a volunteer in this excellent organization. I screened organizations prior to volunteering to see how much of the donations they receive actually go to those they serve. Guess what? About 94 percent of all monies taken in goes to patients and patient services. Almost all the staff is like me— volunteer and logging long hours—because we believe in the cause and we see that ICAN is one darned good and exceptional organization.

Volunteer

Rating: 5

My brother in law was given a short window to live and I recommended that my sister call and within ten minutes Marcia the president was giving wise counsel they needed to extend his life in a quality way.
Just last month one of my clients mentioned that her chemo drug was no longer going to be available through insurance. One call to Ms. Horn and she is now receiving her medication. Her response was, "Last week we had no hope but this week we have hope."
Marcia Horn is truly amazing and has assembled a team that is second to none.

1

Client Served

Rating: 5

Marcia Horn is amazing. I sent her an email when I first got her name, and she was back to me on the phone in 10 minutes. Prompt, extremely knowledgeable, and ready any time , day or night, to discuss my brother's cancer treatment. I don't know what we would have done without her. And I'm very thankful she was there for us.