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2018 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

196 Stories from Volunteers, Donors & Supporters

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.

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.

Professional with expertise in this field

Rating: 5

I am an Advanced Practice RN with over 30years experience and have been involved with the care of cancer patients from not only a provider role but also as a wife and caregiver for many decades. I have advocated for patients in many oncological settings to include Dana Faber, Sloan Kettering and MD Anderson. I became introduced to Marci Horn, President of ICAN in the last two years as I am helping a dear friend navigate the health care system as it relates to his diagnosis with NSCLC. I am thankful for Marcia and the team of experts at ICAN as they have greatly improved the ease of access and awarness to all treatment possibilities, not just those that are mainstream or FDA approved but to include ongoing clinical trials and future trials.
I highly recommend this incredibly valuable resource to any/all patients, advocates and families as we attempt to navigate the tumultuous waters of cancer care. There is no need to go this alone or wonder if/what other options may be available. Marcia and her team work endlessly behind the scenes to help patients achieve better outcomes.
With utmost sincerity,
Colleen Zogby, FNP-C

Professional with expertise in this field

Rating: 5

Marcia and her team are so top notch that I cannot imagine anyone else out there having more information and options available for cancer patients. The work she has done and continues to do is unbelievable in terms of understanding patients and their families as well as treatment plans. This powerful combination is what will one day make Marcia Horn and her ICAN team known throughout the world.

Professional with expertise in this field

Rating: 5

When my brother got diagnosed with Stage IV lung cancer, we weren't sure what to do, who to turn to. Yes, we were in contact with the experts in both Syracuse and Boston and they offered immediate treatment options but we didn't sense there was someone one level higher up who had a grasp of the "big picture" as regards guiding my brother in his journey from treatment to treatment. We had come to understand that this was a world in which one treatment wasn't going to be the answer. Instead, it was a world in which a strategic sequence of treatments would be needed. Chemo, targeted, immuno, radiation, etc. This became very complicated and confusing. To be honest, we felt like we were on an island, lacking someone to run the show.

Then one thing led to another and we reached out to Marcia Horn at the International Cancer Advocacy Network. This was a true blessing. March 15, 2017. I have kept my original email to her.

Marcia has many years of experience in the area of patient advocacy and is extremely well connected with the top medical leaders in the field. She has been with us every step of the way, helping us at each decision point, always available when we need help, always working behind the scenes to determine the most promising "next in line" therapy. I have relied on my own scientific research background to rapidly come up to speed in the science involved and have continually teamed with Marcia in the decision making process. She has been wonderful. We can't thank her enough for the tremendous difference she has made in our lives, helping us to remain calm and confident, helping to keep my brother alive.

Volunteer

Rating: 5

ICAN is simply remarkable. It does more to help people with late-stage cancer than organizations many times its size. I have seen ICAN and its President, Marcia Horn, help numerous people, including family and friends.

I am honored to have volunteered for ICAN for many years and will keep helping out for many years to come, including at the terrific golf tournament and other enjoyable events ICAN puts on each year.

Client Served

Rating: 5

Marcia Horn was nothing short of a godsend to us when my husband first got diagnosed with an EGFR mutation NSCLC. We had felt utterly hopeless until a desperate late-evening internet search led me to ICAN. I immediately sent an email inquiry through its website, and within minutes I received a "call me asap" reply from Marcia. She was so kind and wonderful to speak with and was an absolute wealth of information, spending almost an hour on the phone with me that very night, downloading me on the treatment info, advances, data, research, etc, specific to my husband's disease. Her information helped validate the treatment protocol that was being prescribed for him, which in turn brought us both confidence in our doctors as well as a sense of relief that we were moving in the right direction. I hung up from our conversation with a feeling of hope that I had not had before. That very phone call made all the difference in how we moved forward with a treatment plan and true hope for recovery.

Volunteer

Rating: 5

ElenaG

I have been working as a virtual volunteer with ICAN, and I am also a patient. ICAN is well-organized, and all people I dealt with in this organization are committed to doing excellent work and helping cancer patients. Marcia Horn is always available to help with any questions regarding to find a cancer treatment and/or side effect management. She is a very dedicated, committed person, very quick to respond to questions and concerns.
I always feel her warm attitude and personalized approach, and she is very competent in giving information regarding any of my requests or concerns. I wouldn't hesitate to recommend the services of ICAN to the patients who deal with Cancer, as it can help to save tons of efforts and time to find a proper treatment or resolve an issue.

Client Served

Rating: 5

Very thankful for this wonderful organization. Marcia Horn and her team have been instrumental in educating and guiding me in the options available for treating my EGFR Exon20 insertion mutation. I was diagnosed in December, 2014 with Stage 1A adenosquamous lung cancer. Had a lobectomy initially and things were good for just over a year. About 15 months later the cancer had metastasized and I subsequently had brain surgery, Gamma Knife radiation and a liver resection. Each time the cancer had been 'isolated' so surgery was an option. Six months after the last surgery, there was progression and I underwent 5 cycles of chemotherapy and could not tolerate the treatment. In search of other options, it was ICAN that was influential in my decision to pursue a Phase 2 trial in Houston. I started the trial in September, 2017 and after some tumor "shrinkage", I remain "stable" at this writing and actively continuing the trial. ICAN is a truly dedicated and extremely helpful organization.
Phil Lindquist
EGFR Exon20 Patient

Professional with expertise in this field

Rating: 5

I had spent significant time researching treatment options for my husband's EGFR Exon20 lung cancer. I found ICAN through an established connection with another lung cancer caregiver searching for options for his loved one. I decided to contact ICAN to find out what additional information or guidance may be available. It was the best call I made! I spoke with Marcia Horn whom, I knew after speaking with her for 10 minutes, was the real deal and understood where we were in the disease process and that we were hoping to find any and all options that may be available. I had a little knowledge of the existing trials and after speaking with Marcia, I had a much deeper understanding and someone who could answer my questions and provide guidance on which to pursue and when. It is because of Marcia and ICAN that we ended up with a "3rd" opinion and decided to pursue the most promising trial for Exon20 insertion mutations at MD Anderson. My husband is now in his 10th cycle of the trial and we continue to rely on our partners at ICAN, along with our doctors, to help keep us current on any additional treatment options for the rare EGFR Exon20 insertion mutation. Marcia and her team work tirelessly to advocate for the patient. I am very grateful that I made that phone call and highly recommend her and the ICAN services to others. -Paula Hockster

General Member of the Public

Rating: 5

When a loved one gets a cancer diagnosis, the anxiety, the many questions, and the fear can all be overwhelming. The moment we discovered ICAN, that fear and anxiety quickly became manageable. We are so greatful for this organization, and so greatful to have such a caring team member to help us navigate this difficult journey.

1

Client Served

Rating: 5

I have NSCLC - Stage 4 Adenocarcinoma with an EGFR mutation - Exon 20. I learned early on that I should be the patient and my wife should be my advocate. My wife found Marcia Horn's name on a blog about Lung Cancer. Someone had raved about Marcia and the ICAN advocacy and my wife decided to email her to ask some questions about possible trials and or treatments. Marcia immediately responded and they set up a time to talk on the phone. I was so impressed with the quick response from Marcia especially in today's world. Marcia is one of the most knowledgeable people on the subject of lung cancer and the available treatments. Marcia invests in people and my wife has tons of information after communicating with her either on the phone or in an email. The World of Cancer can be a difficult one, Marcia has been able to share information at a level that is understood by patients. She will guide you through each step and process and point you in a direction that will best benefit you the patient. Marcia has been a Godsend for my family with her wealth of knowledge. She is a kind and compassionate woman and represents ICAN international very well. This company will make you feel like you are important, and in times of Cancer the struggles are real and the challenges heavy, to have this company and Marcia on your team you are ahead of the game. Thank you ICAN!
Sherm J

Client Served

Rating: 5

When I was diagnosed with EGFR, Exon 20 insertion, NSCLC, I contacted Marcia at ICAN to get advice about what my treatment options were. I knew nothing about the journey that I would be taking. I got her name and email address from an online support group. I gave her a call and expected to hear back from her within a week. She called me back within two hours. We talked about current options for me and a trial that was opening up that I may qualify to participate in. As it turned out, I was able to get into the trial. I have stayed in touch with Marcia and contacted her every time I had a question about my treatment.
Marcia has always been positive about treatment options and given me hope. She has also encouraged me to advocate for Lung Cancer Awareness. She has educated me on the importance of understanding what mutations may be in my cancer. With more knowledge about my individual cancer, the more options that may be open for me in treatment.
In the back of my mind, I always know that I have Marcia to answer questions or give advice to me. It is comforting to know that I have someone to reach out to for answers.

1

General Member of the Public

Rating: 5

I personally would give 10 stars if that were an option. ICAN International Cancer Advocacy Network far exceeds any expectations I may have had. I came across Marcia Horn's name on a blog and reached out to her. She immediately contacted me and we spoke for quite some time on the phone. I felt that she genuinely cared about my husband who was diagnosed with a Stage 4 lung cancer with a rare EGFR mutation. We were at UCLA with my husband on an immunotherapy and had had severe issues and side effects and were looking for information on other options. Not only did Marcia share some options, she made phone calls on our behalf, educated us on the various trials that might be available for my husband and always stayed in touch. She also was able to answer many questions that I had and in a way that I was able to understand. Not only did we feel like we had an amazing advocate we felt that we had made a lifetime friend. I have reached out to Marcia at all hours and was surprised when many times she would respond at what most people would call after hours! Marcia and this organization are top notch and the many people who's lives she/they have touched are beyond blessed.

Client Served

Rating: 5

ICAN has given my family and I strength and hope during a state IV diagnosis. With ICAN in our corner, we know we have the best resources to help us with our journey. We are hopeful and proactive because of ICAN and we are forever indebted to Marcia.

1

Volunteer

Rating: 5

ICAN allows for working alongside renowned experts at the frontier of today's medicine. It is my strong 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 offer of admission into my first-choice graduate program. I am also of the strong conviction that their recommendations, with the support of Human Resources Director Andy Young, enabled my job offer as a Medical Coding Analyst at the Indiana Office of Medicaid Policy and Planning. I look forward to contributing what I learned under ICAN as a Health Disparities Research Intern.